Raising Mikah: Our Journey with a 14q Deletion
This blog is dedicated to our family's journey with a 14q deletion. Join us as we take one of the roads less traveled...
Friday, September 2, 2011
New Home Program
So I had wanted to send in a new home study application for Mikah when Natalie was about 6 months...it wasn't accomplished until she was 18 months. Once I got past, err...started getting past the extreme mommy guilt for it taking a whole year longer than my plan, I started to get excited. Wondering what they would say, what would we be doing? Well, we talked with the Institutes last week and have a simple program planned to get back in the swing of things and to find out more specifically where Mikah is developmentally. We are going to be tackling the handstand activity, the not wanting to lift up his head while crawling and the butt scooting for locomotion. It will be getting loud in the Starner house! He is NOT going to like it and I am sure the rest of us won't either for a while. We are going to go back to the beginning for the most part for 6-8 weeks. After which we will take a video of Mikah, fill out new paperwork and send it all back in to the Institutes. After reviewing we will get an even more detailed program which will be in place for 3-6 months and then reviewed and we will most likely be given the opportunity to head off to Philly with our young man.
Now to figure out where to set up the inclined floor and patterning table :)
Thursday, August 18, 2011
332. Poop Messes
What a great heading for my first post...for two years? Almost two years? I guess I was pregnant with our little red headed fireball the last time I put my fingers to the keys and typed. Let the words flow out. But poop is a happening thing in the Starner house. Especially the size and quanitity of a certain young man's poop. My fingers are not enough to count the number of explosive poops that have happened recently. All requiring a dunk in the tub which is no small thing since a certain young man does not take to the water by himself. How messy! and stinky! But I love him. I can think of no other reason that I haven't really lost my cookies. Some know that at point I couldn't even wipe a snotty nose or think about changing a peed in diaper without gagging. I will admit to still having this problem with other people's children but God in his divine mercy has bestowed upon me the ability to help my own children out with these needs.
So poop happens. And this mom is struck with guilt and sadness. Both conveniently aligned to rob me of joy. Of peace. Of my sound mind. Guilt because was I not paying attention? Was I being lazy, not being a diligent and observant mom? Mikah is for the most part content. Content to do his thing. Zoom around the house, or should I say scoot, playing with this toy or that. His contentment reaches far beyond my own and is at times too much. When the red head calls or Ellie needs, or dishes are piling up...errr...falling out of the sink...well you get it, right? Those who aren't screaming and are happy and content may get left to their own. I have made it a point to not let this happen since I became aware that time was zipping away and Mikah was being left in its wake. But still the guilt monster does its little dance on my shoulder whenever there is a mess. Were you present? Were you not?
And then there is the sadness. I am not sure which monster stings the most. Which will leave more marks. The sadness because maybe I was paying attention. Maybe I was completely in the moment and it just happened. And Mikah couldn't tell me. He couldn't say, "Hey mom, I need to poop." Which is worse? I really can't say. They both have the ability to steal my joy that I fight to grasp.
So I make my list...of gifts. I am on my way to 1000. 332 and counting. Some are hard, like number 332, poop messes. Some are easy, like number 1, the still of mornings and number 2, God's words and number 3, Jesus offering thanks...The counting cleanses the air of the stench. It wipes the dirt from my eyes. It frees my thoughts from guilt or sadness and the joy seeps in. It soaks up the day's clutter and peace enters my soul.
#310-332...of counting gifts...more of the One Thousand Gifts that never end...
310. Family zoo day
311. School planning
312. Visits with old friends
313. 4 year molars
314. Innocent as doves
315. Camping memories
316. Ellie rising early
317. Reading the Word aloud to my once little girl
318. Parables in Matthew
319. Dinner in the slow cooker
320. Quiche crust
321. Chocolate milk filled circus cups
322. Gold finches crowding for a spot
323. Squirrels tumbling
324. Seeds blowing in the wind
325. A single leaf making its way to the earth
326. Butterflies laying eggs
327. Hummingbirds searching
328. Little girls waiting
329. Finding coupons
330. The little blessings on hard days
331. Tot school
332. Poop messes
Today, if you’d like to share your own marking towards One Thousand Gifts of thanks, of making your life about thanks to God — (please, jump in!) — just go here.
Labels:
1000 Gifts,
Joy,
Mikah,
Multitude Monday,
Peace
Monday, January 11, 2010
Tuesday, October 13, 2009
Just some thoughts. I know it has been a while since my last post. Just haven't felt like getting sucked into that much time on the computer and I guess no news is good news :)
I think most of you know by now that I am pregnant and our newest little one will be here sometime late January or early February. I love being pregnant! I love giving birth! I love all of it! Some of you might think I am crazy and that is okay. I still love it. For those who knew me many years ago, you might be laughing hysterically as I was the one who vehemently declared to everyone that might be listening that I would NEVER have kids. Let's just say God does have a sense of humor. A big one! This pregnancy has been so different from my pregnancy with Mikah. I am in a different place and it just feels normal. I can't really express it in words. You know if you have been there what I mean. I think subconciously I knew there was something wrong with Mikah. I think my 'knowing' was overshadowed by the giant fog in my brain created by the death of my brother and sister-in-law's baby, Alastair. That is a whole 'nother post which may never get written. I'll just sum it up by saying that it is different, in a marvelous, wonderful, miraculous way. God is healing my broken heart through this pregnancy. We are so excited for so many reasons. For Mikah to have a little brother or sister to grow up and compete with. For Ellie to have another sibling to love. For us to experience another perfect miracle and gift. We are also excited because there was a brief moment when there was a possibility, from the doctor's perspective, that I may not be able to get pregnant again. Now, who knows, God was probably laughing hysterically at them. Children are such a gift. How anyone could not want more, is beyond me. God desires for us to be blessed in amazing ways and one of those ways is through the arrows He plants in our quivers, if we allow Him the opportunity. Again, another post worth of discussion and thoughts.
I guess I just wanted to say Hi. We are still here and kicking (some of us quite literally and mommy's bladder is protesting). We are just taking a slower pace to life right now. One that doesn't include a lot of blogging time :)
I think most of you know by now that I am pregnant and our newest little one will be here sometime late January or early February. I love being pregnant! I love giving birth! I love all of it! Some of you might think I am crazy and that is okay. I still love it. For those who knew me many years ago, you might be laughing hysterically as I was the one who vehemently declared to everyone that might be listening that I would NEVER have kids. Let's just say God does have a sense of humor. A big one! This pregnancy has been so different from my pregnancy with Mikah. I am in a different place and it just feels normal. I can't really express it in words. You know if you have been there what I mean. I think subconciously I knew there was something wrong with Mikah. I think my 'knowing' was overshadowed by the giant fog in my brain created by the death of my brother and sister-in-law's baby, Alastair. That is a whole 'nother post which may never get written. I'll just sum it up by saying that it is different, in a marvelous, wonderful, miraculous way. God is healing my broken heart through this pregnancy. We are so excited for so many reasons. For Mikah to have a little brother or sister to grow up and compete with. For Ellie to have another sibling to love. For us to experience another perfect miracle and gift. We are also excited because there was a brief moment when there was a possibility, from the doctor's perspective, that I may not be able to get pregnant again. Now, who knows, God was probably laughing hysterically at them. Children are such a gift. How anyone could not want more, is beyond me. God desires for us to be blessed in amazing ways and one of those ways is through the arrows He plants in our quivers, if we allow Him the opportunity. Again, another post worth of discussion and thoughts.
I guess I just wanted to say Hi. We are still here and kicking (some of us quite literally and mommy's bladder is protesting). We are just taking a slower pace to life right now. One that doesn't include a lot of blogging time :)
Sunday, May 24, 2009
The Big 'Coon Hunt
The mornings of trash pick-up Dave has been having to go out and put all our trash back into our trashcan even though we have a "locking" lid. Thus the Big 'Coon Hunt started. The first night he and Ellie very carefully placed a small plate of dog food in the live trap...in the morning there was no raccoon and there was no dog food and the trap remained unsprung. After consulting the "picture box" (i.e. computer) he found that raccoons love marshmallows and peanut butter. Ellie and I made a trip to the dollar store for marshmallows and peanut butter and the results are in...
The little white things are marshmallows.
Wednesday, May 20, 2009
Ice Cream...I mean Dream, Anyone?!
I found this lovely blog a few weeks ago and I am so glad I did. She has blogged about a what looks like a wonderful new book coming out, The Ice Dream Cookbook by Rachel Albert-Matesz. Nourishing Days says this about the book, "The great thing about this book is that not only are the recipes dairy and gluten free, they are also low in sugar. All of the recipes are sweetened only with honey or agave and stevia. So, for anyone who can not tolerate cane sugar, or tries to stay away from too many sweeteners - you can enjoy ice cream (dream) again!". I am sold!
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!
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
I found myself in the midst of a major "Duh!" moment yesterday. I was reading a beautiful post by Lady of Virtue on her blog Large Family Mothering. At some point during this post something in my brain clicked and I realized that somewhere along the way, amidst all the different 'therapies' and 'specialists' and appointments and procedures and surgeries and...okay I will stop. But somewhere along this journey I forgot to just 'mother' Mikah. I forgot to do what comes naturally. I forgot that at the core of his being, he is still a baby. He still needs to be nurtured. No amount of 'therapy' or 'specialists' can replace my nurturing and caring for him. He needs me to do with him what came so naturally with Ellie. His chromosome deletion doesn't negate his need for me to follow my instincts. It doesn't mean that he needs me to change they way we naturally progress on the road to being an independent human being.
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".
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".
Labels:
Children,
Eating,
Mikah,
Mothering,
Perserverance
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