Steps of Faith

I want to apologize for not posting. Again a thousand times I have wanted to, but simple haven't had the time. So much I have wanted to say, but at the end of my day with both girls, and teaching I usually pass out on the couch from exhaustion. My life sometimes feels as if every possible moment is filled up with tasks, and there isn't a mere second left. Such a mom thing I know.

Since Clara has been home she has been a little all of the place, great and now well..good. However very happy and active. We are struggling with finding the right plan of action with Gtube feedings. Once again we have had to go back to her original formula, as her little stomach just can't tolerate much more or a different kind. The reflux has gotten worse and she is on even more medicine for that. She is having continuous feeds for 14 hours at night, and three bottles a day. Which is NOT family friendly, but you know it is what it is. I don't really think she is getting any more volume than she was before the Gtube, which is frustrating. I am a creature of progress, so wanting to desperatly see growth somewhere. But I have learned with Clara things are just a process, in due time we will get there.

We are hoping to figure that out real soon.

Clara was admitted to the hospital Friday evening for a virus/trach infection? She had a high temp, vomiting, which led her to be dehydrated. I stayed with her over night at Wake Med for observation. She woke up with a smile, no fever, and drank some from a bottle. Then we got to go home.

These little hospital visits are just part of her little life, and they will come I think always. For us they seem very normal until we get home and realize the toll they take on us and the family. I was exhaulsted from the stay even though it was short and Madeline was very emotional, about us being apart.

Madeline Type 1 has been all over the place. A few weeks ago she was low everyday, and they changed her ratios and over night lantus. Then this week she has been running high. Then there was Wednesday when I forgot to giver her insulin after her breakfast and she got sick at school and tested over 400. "Mother of the year" was all I could think, until a school friend/mom of her Type 1 kid gave me a hug and said it happens.

Yesterday as we are all loading up in the car to take Clara to the doctor, I noticed she was real hyper so we checked her BG.It was over 300, but her Ketones were negative. Jason and I were both like "really?...seriously these two are crazy!!!"

These highs have been coming and going all week, but they do come down by themselves. Last night with MeMe and Pop she was back down and today so far so good.

Just another week of school for me. There is so much to do to get ready for the end of the year, but I will get there before June 16th.So ready for a break and to find just some time for ME that don't include Blood sugars, trachs, and Gtubes.

I also pray for time filled with just more love and time with the girls, Jason and a summer of good health.

Below are some just some photos to catch up everyone up with the family.

This day we were all three outside. Obviously Clara was over it! The sun was just to bright. She didn't even know when to smile.

Sitting in the chair with daddy.

Visit from Uncle Jonathan, Aunt Kelly and the cousins.

These three above photos were taken on Mother's day. We had just a nice day at MeMe and Pop's house. Clara had been home for about a week from her last surgery. It was just great to see her smile and interact with everyone.

Clara's new AFO's. She grew so much after the Gtube they had to be restretched and new ones ordered

I will keep these forever they are just so darn cute!!

Working on getting a cookie to my mouth!

Just a big smile at Madeline's softball game. Clara attends all games with us. She loves sitting in her stroller and being outside.

Painting in the bath tube.

Eating squash. Feeding has started again and is slow. She doesn't mind us putting it in her mouth. It takes her a while to figure out what to do with it. We will start seeing a feeding team on June 30th, hopefully to help.