This blog is dedicated to our family's journey with a 14q deletion. Join us as we take one of the roads less traveled...
Sunday, May 24, 2009
The Big 'Coon Hunt
Wednesday, May 20, 2009
Ice Cream...I mean Dream, Anyone?!
She is also holding a giveaway for a copy of the book! All you have to do is leave her a comment. Check it out!
Tuesday, May 19, 2009
A 'DUH" Moment
Where am I going with this?? All these thoughts were swirling around in my little brain in relation to Mikah eating. He doesn't eat. Yes, he has his tube and for some people this is how they eat, how they must eat. Many people, young and old, have physical problems, they lack anatomical features needed to eat, they swallow their food into their lungs, medically speaking they aspirate. Mikah does NOT have these problems. He just doesn't eat. He used to eat. He loved sweet potatoes and would eat 4-6 ounces at a sitting. The problem was the "sitting" would be an hour. He never had time to not eat and for a little fellow with a little mouth and little muscles and tone that was just too much work. His body just couldn't do it. This is one thing that likes to start replaying in my mind over and over again. What could I have done differently? If I hadn't been so adamant about nursing him would things have been different? Where did I go wrong in feeding my son? These of course are useless, mind numbing, depression boosting questions that must be squelched as soon as they start and so I tell myself to stop. It doesn't matter now. We cannot change the past and God knew what was going to happen.
So back to Mikah not eating and not having any of the aforementioned eating/swallowing problems. He actually had a swallow study done a week before he had his g-tube placed and he doesn't have a problem swallowing. In fact, they usually have the kids come back a month or two later for a repeat test and Mikah was so good at swallowing they didn't want to see him.
So why doesn't he eat? After he had his surgery for his g-tube he stopped eating. I hear this from other moms. There are a multiple of guesses and perfectly reasonable explanations but really no one knows. Over the past several months this is one issue in Mikah's life and yes, I think it deserves the rating 'issue', that has been surfacing more and more in my little talks with myself. Um, did I just write that? Now you all know, I talk to myself. Not out loud. Then someone else might be able to jump in with their two cents and where would the fun be in that?
Okay, so Mikah eating. Little things have come up, comments made to me, posts on blogs like the one mentioned above and this one by Jennifer at Three's A Charm. There was a possibility recently, which I still haven't brought myself to blog about, that Mikah was going to have surgery to remove his tonsils and adenoids and that afterward he would need ICU care. One reason being that he would need suctioning because he has swallowing difficulty. I very adamantly proclaimed that he most certainly does NOT have a problem swallowing! And this person said, well he doesn't eat of course he has swallowing problems. But he doesn't! So we are back to this question of why doesn't he eat.
Something in the post on Large Family Mothering and Three's A Charm awoke a sleeping neuron in my brain and it just seemed to click. (I am hoping it doesn't un-click) Why on earth don't I just do what I do naturally? All the suggestions from therapists and specialists have not worked. When Ellie was learning to eat did I use a Jiggler or a Z-Vibe on her mouth for 5 minutes before eating, did I swing her around and stimulate her arms and legs, did I 'massage' her cheeks and stick my fingers in her mouth and brush her teeth and gums and try to get her to bite down?? No! I am positive I would have remembered that and that she would have been severely out of sorts by the time we actually got to the eating part. Which is exactly what happens with Mikah. By the time the food is on the spoon and being flown to his closed mouth and through his flailing arms, well, by then there is no food on the spoon...hopefully you get the picture.
With Ellie it was much simpler. When it was time to eat I sat her in her highchair. Put some warmed food on a spoon and put the spoon and the food in her mouth. She either spit it out or she swallowed it. When we had done this for what seemed like a sufficient amount of time I nursed her. We then repeated the process for all the other mealtimes during that day and started over the next day and the next day until one day she ate a whole meal off a spoon and then we started working with a fork and different kinds of foods.
This is my simple plan with Mikah. He is not nursing anymore, something that I am sad about at times especially when the questions about how this all happened begin. Again something I cannot change. Since he is not nursing I will sit him in his highchair when it is time to eat and before his tube feeding and for what seems like a sufficient amount of time I will put food on the spoon and airplane the spoon into his mouth. Some will come out and I will swish it up with the spoon, some will stay in and this he will swallow.
And someday, he will eat all 4 ounces from the organic applesauce container and I will cry tears of joy. Similar to the tears I cried when I realized that Ellie just didn't need or want to nurse anymore only these tears will not hold any regret because I will know how hard Mikah and I have worked for them. I will know the journey that has led to them. I will know that I have found my way back to truly mothering my son.
Did you make it through my ramblings? If you did you will be excited to know that I started to put this simple plan into action this morning. Here is the email I sent Dave after lunch: I just fed Mikah some more applesauce. I think he really wants to learn how to eat. He didn't scream. He did turn his head away but willingly opened his mouth several times. He even grabbed the spoon, I thought he was trying to shove it away but one time he grabbed it before I could move and he took it to his mouth and licked some applesauce off. So far today he has eaten half of a little applesauce container. I warmed it and sprinkled cinnamon over it. I will try again before his 4:30pm "meal".
Monday, May 18, 2009
The Simple Woman's Daybook~ May 18, 2009
Tuesday, May 12, 2009
From Seeds to Harvest
And every lady needs a good hat...errr...visor while working in the garden. This is the first outdoor, sunny time of year since forever ago that I am using my glasses instead of contacts so my eyes desperately needed some protection. Ellie thought I got one for me and one for her :)
The clematis that wouldn't die. Any plant that is still living after the beating this one took definitely deserves a spot in the Mel's mix!
Honeysuckle anyone?? This started as a very small shoot from my grandparent's vine. It was transplanted three times as an infant and I really wasn't sure it would make it after the third transplant. Now it is taking over the south side of our deck!! Let me know if you need a starter!
Ellie with one those previously mentioned weeds.
More gardening to be done later. I received a gift card for flower/plant shopping for Mother's Day. I will post what ends up in the cart later!
Thursday, May 7, 2009
Battlefield of the Mind Giveaway
Wednesday, May 6, 2009
Psalm 71:5-8
"O Lord, you alone are my hope.
I’ve trusted you, O Lord, from childhood.
Yes, you have been with me from birth;
from my mother’s womb you have cared for me.
No wonder I am always praising you!
My life is an example to many,
because you have been my strength and protection.
That is why I can never stop praising you;
I declare your glory all day long."
Some Peace
“I waited patiently for the Lord;
He turned to me and heard my cry.
He lifted me out of the slimy pit, out of the mud and the mire;
He set my feet upon a rock and gave me a firm place to stand.” (NIV)
You Remain
Tuesday, May 5, 2009
The Simple Woman's Daybook~ May 5, 2009
Outside my window the sun is starting to peak over the trees, I wonder if it will be a sunshiney day...
I am thinking it is good I didn't do this yesterday; there would have been many angry words...
From the learning rooms Ellie is loving the reading program; I really need to re-group and get on the ball with Mikah's program; need to find more patterning helpers...
I am thankful for God's peace and for beautiful songs put together by some of God's followers; one that has been special to me recently is By Your Side by Tenth Avenue North...
From the kitchen vegan burgers, homemade fries, salad and chocolate chip cookies...
I am wearing my pjs...
I am reading several books and just finished The Year My Son and I Were Born; it is one of the best books I have read recently...
I am hoping for a peaceful week...
I am creating... honestly, I don't know what I am creating right now; I am just trying to get by...
I am praying for God's peace that surpasseth all understanding...
Around the house regular chores, a grocery list to make, garden boxes to be filled...
One of my favorite things watching Mikah and Ellie play together...
A few plans for the rest of the week a doctor's appointment Thursday, praying that the doctor's appointment is nothing, Ped appointment Saturday to talk about Mikah's "sleep" study, trying to get back into a new groove and schedule...