So it has been a while since I last posted, this is going to be a long one.
Well to start off Kenna has been sick with a nasty cold, I am not sure where she got it, could be preschool, anyway 4 year olds are very needy when they a sick. I am trying my best to give her as much attention as I can, but it seems miss Arianna does not approve of this. One morning while I was trying to comfort a coughing Kenna, Arianna decided to find a way out of her rocking chair. You see it has a waist strap do you can't slide down and out, but Arianna loves to do back bends and arched her self over one side of the chair, I came to her room to check on her cause she seemed to be laughing and found her head first on the floor, her feet still in the chair, barely hanging on, she thought this was a fun new way to see the world, what am I going to do with this kid?
She still loves to pull her oxygen out of her nose, so I tried putting socks on her hands to make so she can't get a hold of it, but she still finds a way. I can see that she wants to do so much but her body just doesn't understand what her brain wants to do, she is such a smart little girl she just can't get the signals right.
We went in for her FEES study yesterday, and she did not do so well. She continues to aspirate even thickened foods. This is a good thing in one way, it means that Dr. Grimmer can not remove any tissue from her airway, so we don't have to go in for surgery anytime soon. He wants to wait until she is 2 to do anything. He did say the only other option to help the apnea spells is a trach, which he does not really want to do, he thinks that she has done so well in the past 19 months that it would be a set back. He is hopeful, and so are we, that she will grow out of the laryngeal malaysia, most kids do.
As for this mommy, I am really feeling the winter time blues, we are such an outdoors family and love to go camping and just be out in the sun and fresh air. We don't get to spend much time with friends and family for fear of catching colds, I have tried so hard to keep the kids healthy. I think I have done well to keep Arianna from the cold Kenna has, but I woke up this morning feeling really cruddy, who takes care of me when I don't feel good? I know I have let myself get a little run down, these kids are a lot of work and I don't get a lot of me time to just recoup. I am taking a daycation next Saturday, Matt got me a day spa package for Christmas, thanks honey! I hope that it will help me get back in the game. I am also going to try and get a new healthy eating habit, I seem to forget that I need to eat too. Let's hope for a good start to a healthier new year.
That's all for now Kenna wants me to go fix her Mac & Cheese for her breakfast, hey anything to get her eating works for me.
Julianna
1 comment:
Hmmmm....Arianna and Rhett should really get together. He had that same rocker, and around 18 months he started doing the exact same thing! We ended up getting rid of it. Silly kids.
We also have talked of going the trach route with Rhett. He has tracheomalacia, and severe apnea. When he has his MRI on the 28th they will do a cine MRI to see exactly where he is obstructing, and if it's the tonsils that are the problem, or if it's the malacia. We are really fighting the trach because his speech and all that stuff is amazingly well for a 2 year old with Down Syndrome. It would be a HUGE setback for him.
Like you said, most of the time they outgrow the malacia stuff, but we also have to worry about the apnea making his pulmonary pressures sky rocket too. Such a fine balancing act with these kiddos huh?
((Hugs!!))
Pam and Rhett
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