The surgery was a success. Clara has had her very own healthy airway for over a month. The stent came out three weeks after the surgery, and the following week we vacationed with family at the beach. In between she did have a tracheal infection which needed antibiotics, and has had some nasty granulation around her stoma. All of which as been resolved. Other than that she has done remarkably well. We have frequented Chapel Hill a lot for appointments! Our van just knows the way.
Clara has had two broncs since the stent removal, and each report gets better and better. Last week Dr. Z. did laser a small amount of reactive tissue inside her trachea and dilated it (which he said he didn't really need to do). She will now have broncs every three weeks at the hospital, and we will just wait and see about decannulation.
We had a wonderful vacation together with my family. We brought one of Clara's nurses for a week, which gave Jason and I, believe it or not, time together. It felt like old times sitting on the beach side by side with our toes in the water laughing and talking. We also had family time with both girls on the beach. It felt all just so normal.
In the middle of all this we also managed to clean out our house, put it on the market, and sell it five days later. This is something Jason and I have been talking and praying about for along time. We have known that we need Clara downstairs. She is just getting to big especially for me to carry up and down the stairs. We have actually lost care givers because of our situation. This past year I really wanted to get through her surgery and find the right time to call a realtor. I told Jason, if we do it we are going all in 100%, and that is what we did. Selling it is bitter sweet for us. However I know that a family will love it as much as we have.
We are under contract, waiting and praying it will all work out and we can close soon. Things are still up in the air. Except for the actual packing I've planned as best as I can for a move. I know Jason and I are capable of getting stuff done in a short amount of time, but still I am praying for answers soon.
Clara actually had her preschool assessment today with the Johnston County EC Preschool department. This is also another thing I have fretted over for months. Six months ago I couldn't even decide if I was going to even let her go through the process. I kept saying "I have to wait to and see where she is medically". After much encouragement from Clara's therapists, I did decided to start the process this past spring. No harm in trying.
In the month of July Clara and I went to music classes together in Cary. It was there, really after the first class I knew Clara would thrive in a classroom setting. She did amazing in music class. She listened and followed the teacher so well. Socially she did not get overwhelmed and eventually started noticing the other children. She tried so hard with each instrument and did way better than I thought fine motor wise. Once again I under estimated my sweet Clara.
Hopefully before her third birthday we will have an IEP meeting, learn the results of her assessment and what and where she qualifies for in preschool. Time to let go a little and let Clara soar!
M has had a great summer. We have also started the process with an insulin pump for her. She's got it on, and we are practicing this week with saline. Next week we will put insulin in it. We will put up her needles, insulin pens and she will be a full time Omnipod user. Wow! How far she has come. I know without a doubt she will do great. As I have said many times before she is our anchor. Keeps parenting very real!
So as you can see all wonderful progress for both girls, but none the less this summer I have been a bundle of nerves with how wonderfully full our plates are. To much thinking, planning, worrying over things I just don't have any control over. Recently I have had to take a step back, stop trying so hard and lean on His grace instead. Letting go is not easy for me, it is a daily thing. Daily thing I say!!
Then I read sometime back scripture that I have revisited a lot.
It was not by their sword that they won the land,
nor did their arm bring them victory;
it was your right hand, your arm,
and the light of your face, for you loved them.
Psalm44:3
"It becomes to tempting to rely on our own strength to achieve victory for our lives. Doing more gives us a sense of control, but resorting on our own swords eventually gets exhausting. We need the Lord's right arm, hand and light of his face. He uses his arm to call us to him, he takes the sword from us and says you can lay that down, daughter. You don't have to fight anymore. Then he looks us in the eyes and reassures us that He loves us and will take care of us. It's time to stop trying so hard and trust Him. we can rest our tired heart today." (Gerth, What your Heart needs...)
I am so happily overwhelmed with our family's progress. With things so good it is really easy for me to get caught up in trying to make everything RIGHT in my life. I have to slow down and just simply give it up and trust doors will open and pieces will be put together. What a blessing to truly have Hope for our future and not constantly feel as though the bottom is going to drop out. God has provided opportunities for us to move forward, and to pursue more wholeness in our lives in whatever we need. Just like He says in Jeremiah 29:11
For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future.
Music class. Not sure about the really big drum.
All in white at Kure beach
North Carolina Aquarium at Fort Fisher
Fishy Fishy restaurant in
South Port
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