While eating breakfast this morning I asked Keaton if he wanted to go to church with me. Normally mommy goes, daddy stays home with the kids just because McKenna's puking and retching and we don't want to risk someone ripping out the feeding button. So when I asked Keaton if he wanted to go he threw down his bowl of dry cereal and started shouting, "Go to church, go to church."
Keaton and mommy walked into church and he just kept asking, "What is this, mommy?" Was sad that he didn't even know what church was. We checked him in, got a nametag on him and mommy took him back to the Lamb Room, then the water works started. I was so proud of him. Luckily for mommy Amy Townsend was walking her son, Jackson, back to the Lamb room at the same time, and we saw Kristin's son there too, so mommy felt a little better knowing that Keaton had met two of the boys.
So we got to the door and my eyes were watering and we saw the puzzles on the table and I asked Keaton if he wanted to do a puzzle. He was so excited I almost dropped him as he squirmed out of my arms and into the teachers.
I couldn't really concentrate on the message during church because I was so nervous as to how Keaton was doing. But they said he did great. He got to color, go to the jungle gym, had a snack and made new friends. He was excited to see mommy when I picked him up, which made me feel good.
I am excited to take him to church next week, and excited for the day when McKenna gets to go too.
Sunday, May 22, 2011
Monday, May 16, 2011
GJ TUbe
Sweet Little McKenna, how I wish we could snap our fingers and the Lord would heal her. I wish He would speak the word of healing and I would love to see all the people smile in amazement at the mighty work of God. Well, we know His works are mighty, so maybe that is just me trying to manipulate Him into healing. Did it work? Truly though, speak it God and it is done...any minute now...we are anxiously awaiting.
Daddy and McKenna are down in radiology having the G Tube switched to a GJ tube. Mommy was not brave enough to go. Watching your child scream and cry, seeing their eyes fill with fear, nope...can't do it. Tried to do it with her this week when they placed and IV. I had to leave room. Thought I was going to puke, the site of that with the blood? no thanks!
I pray that McKenna is not forever scarred by the medical history that she has had this far. I pray that this is just a small stepping stone in the right direction to getting Mickey on board for eating orally and off this feeding tube. I pray that McKenna uses these stories, these blogs, the tears shed for her, the prayers lifted on her behalf, the challenges thrown her way...I pray she uses it all for the Glory of God and one day we will look back and hardly remember the retching, puking, late nights, early mornings, fights, lack of sleep, nightmares, battles with food and drinks, etc.
Anxiously waiting for Daddy and Mickey to come back upstairs. They say this button is a good size bigger and sticks out a lot further from the stomach. Nervous about that. Nervous she will get it caught or snagged on something. Nervous she won't tolerate the J feeds or that she will tolerate them so well that they make us do 24 hour feeds. Worried about how soon we can get to only night feeds, no long stretched out day feeds. Worried, fearful, scared. Just ready for McKenna to be healed, well and prospering.
Daddy and McKenna are down in radiology having the G Tube switched to a GJ tube. Mommy was not brave enough to go. Watching your child scream and cry, seeing their eyes fill with fear, nope...can't do it. Tried to do it with her this week when they placed and IV. I had to leave room. Thought I was going to puke, the site of that with the blood? no thanks!
I pray that McKenna is not forever scarred by the medical history that she has had this far. I pray that this is just a small stepping stone in the right direction to getting Mickey on board for eating orally and off this feeding tube. I pray that McKenna uses these stories, these blogs, the tears shed for her, the prayers lifted on her behalf, the challenges thrown her way...I pray she uses it all for the Glory of God and one day we will look back and hardly remember the retching, puking, late nights, early mornings, fights, lack of sleep, nightmares, battles with food and drinks, etc.
Anxiously waiting for Daddy and Mickey to come back upstairs. They say this button is a good size bigger and sticks out a lot further from the stomach. Nervous about that. Nervous she will get it caught or snagged on something. Nervous she won't tolerate the J feeds or that she will tolerate them so well that they make us do 24 hour feeds. Worried about how soon we can get to only night feeds, no long stretched out day feeds. Worried, fearful, scared. Just ready for McKenna to be healed, well and prospering.
Friday, May 6, 2011
Speak
Speak Lord, that's all you have to do. Speak it, and it will be done. That's my prayer today - speak that McKenna is healed, and she will be. I beg of you. Don't know what else to do, God. Please, please, please...
Wednesday, February 2, 2011
Potential Weaning
So my dad told me last week about a distant relative's son that retched and puked so much the enamel on his teeth was warn away, and he had a feeding button. I was shocked and obviously wanted to know more because it seems like whenever I do research to try to find solutions for McKenna nobody has the same problem we do, or nobody has solutions. Not only that but I can't find a support group which is totally what I could use right now, a shoulder to cry on that is going through what we are going through.
I was further in awe when my dad told me about Jack, the little boy, being weaned off the feeding tube. He no longer retches and is eating 100% orally...no feeding tube. Can't even imagine that. So I emailed Krista asking if I can call and ask her a million questions and she was so helpful to send me a blog and two web sites along with details on the weaning process at home. I am dying and eager to start this weaning process, but planning to wait until we go to Chicago and do the swallow study and make sure that they are okay with us moving forward with a drastic approach like this.
Basically you take a week to decrease tube feeds and by day 6 you are off tube feeds completely. Babies lose average of 6% weight which means McKenna would lose about 1 1/2 lbs and they will allow baby to lose up to 10% but anything over that they make you get back on the feeding tube.
So yesterday I started doing more research, looking at blogs, watching youtube videos etc and it is so sad to see kids that can't eat that want to. They looked so confused and frustrated in the video and it made me question if I really will have the courage to go forward with this process. I want to try it but making McKenna go without food breaks my heart.
So, I am in prayer. We would like to wait to do it until the beginning of March. Who are we kidding, would be easiest to do it when daddy is out of town because he stresses so much about this stuff, but he won't be gone for several months so I am just praying that God give me direction and if this is something we are suppose to do that Kyle would be on board and we would start this approach by beginning of March.
In the mean time, I am giving McKenna cheerios throughout the day. She spits them out, chews them up and spits them out or just throws them, but she needs to be okay with playing with food, or more so IIII need to be okay with her playing. Also I have not really orally fed her for two days. I always give her purees but she doesn't like babyfood and it is so routine, so I am trying more of the weaning approach. Giving her solids like string cheese, crackers, cereal, pizza, etc and letting her play with it and put it in her mouth and chew it and spit it, etc. Hope doing this doesn't set her backward, but honestly we need to try something different at this point, so I am doing this, and giving her a sippy cup all day long to carry around with her. She took multiple drinks of water from it today and even took drinks from a play teacup. I was in tears. So grateful.
I can't even begin to imagine what it will be like when McKenna starts eating again. So many things we take for grantit, but I will be so grateful for my daughter not having to retch all day long, not waking up to retching, not sitting outside her bedroom during nap time until she falls asleep to make sure she doesn't retch, getting to go to church and put the kids in nursery, not having to send her to a special education classroom because of the retching and feeding tube, both kids getting to go to pre-school, mommy going out with friends before 7 pm because daddy would be able to feed both kids, going on playdates or running errands without scheduling it around a 2 1/2 hour return home to tube and oral feed at same time, not cleaning up puke from carseat every week, not changing 4 plus outfits on McKenna everyday from puke, not having to run laundry loads daily because of spit cloths smelling up the house every night, not having to stack up on carpet cleaner because of the puke...the list could go on and on...yes will be more convenient for me, but more importantly will be so good for McKenna. NO more painful retching, no more painful tube changes or cleanings or possible tearing it out, or risk of infections or fear of her getting sick because she is more at risk and suffers more from gagging/puking, no more sore throat and erroded esophagus from retching...please Lord, let this be a possible answer for us.
I was further in awe when my dad told me about Jack, the little boy, being weaned off the feeding tube. He no longer retches and is eating 100% orally...no feeding tube. Can't even imagine that. So I emailed Krista asking if I can call and ask her a million questions and she was so helpful to send me a blog and two web sites along with details on the weaning process at home. I am dying and eager to start this weaning process, but planning to wait until we go to Chicago and do the swallow study and make sure that they are okay with us moving forward with a drastic approach like this.
Basically you take a week to decrease tube feeds and by day 6 you are off tube feeds completely. Babies lose average of 6% weight which means McKenna would lose about 1 1/2 lbs and they will allow baby to lose up to 10% but anything over that they make you get back on the feeding tube.
So yesterday I started doing more research, looking at blogs, watching youtube videos etc and it is so sad to see kids that can't eat that want to. They looked so confused and frustrated in the video and it made me question if I really will have the courage to go forward with this process. I want to try it but making McKenna go without food breaks my heart.
So, I am in prayer. We would like to wait to do it until the beginning of March. Who are we kidding, would be easiest to do it when daddy is out of town because he stresses so much about this stuff, but he won't be gone for several months so I am just praying that God give me direction and if this is something we are suppose to do that Kyle would be on board and we would start this approach by beginning of March.
In the mean time, I am giving McKenna cheerios throughout the day. She spits them out, chews them up and spits them out or just throws them, but she needs to be okay with playing with food, or more so IIII need to be okay with her playing. Also I have not really orally fed her for two days. I always give her purees but she doesn't like babyfood and it is so routine, so I am trying more of the weaning approach. Giving her solids like string cheese, crackers, cereal, pizza, etc and letting her play with it and put it in her mouth and chew it and spit it, etc. Hope doing this doesn't set her backward, but honestly we need to try something different at this point, so I am doing this, and giving her a sippy cup all day long to carry around with her. She took multiple drinks of water from it today and even took drinks from a play teacup. I was in tears. So grateful.
I can't even begin to imagine what it will be like when McKenna starts eating again. So many things we take for grantit, but I will be so grateful for my daughter not having to retch all day long, not waking up to retching, not sitting outside her bedroom during nap time until she falls asleep to make sure she doesn't retch, getting to go to church and put the kids in nursery, not having to send her to a special education classroom because of the retching and feeding tube, both kids getting to go to pre-school, mommy going out with friends before 7 pm because daddy would be able to feed both kids, going on playdates or running errands without scheduling it around a 2 1/2 hour return home to tube and oral feed at same time, not cleaning up puke from carseat every week, not changing 4 plus outfits on McKenna everyday from puke, not having to run laundry loads daily because of spit cloths smelling up the house every night, not having to stack up on carpet cleaner because of the puke...the list could go on and on...yes will be more convenient for me, but more importantly will be so good for McKenna. NO more painful retching, no more painful tube changes or cleanings or possible tearing it out, or risk of infections or fear of her getting sick because she is more at risk and suffers more from gagging/puking, no more sore throat and erroded esophagus from retching...please Lord, let this be a possible answer for us.
Wednesday, January 26, 2011
Braces
Breathe...just breathe. Eventually if I say it enough times, will it allow me to gasp a big enough breath to get to the next one? Starting to feel like we can't catch a break. Well, have felt that way for a while, but then my daughter started walking. What a joy, a blessing, a miracle and answer to prayer...but of course it is followed by band news.
Three weeks ago McKenna started walking. A week after she started, Jean, our PT with Myer Center mentioned McKenna may needed braces to help her legs/feet straighten out. She thought we should just do exercises (tip toes and turning her foot on its side) for six months to see if we could avoid them. Today our PT with First Steps, Tara, confirmed that McKenna needs the braces and she doesn't think we should wait.
My heart breaks for McKenna. While these aren't long thick metal braces, or ones that go clear up to her knees, they are still braces - one more thing that she has to go through, one more thing she has to endure and has to have "fixed".
Grateful that McKenna's feet will be fixed through these braces. Grateful there is an answer and we won't be left wondering what to do or what's wrong. Grateful that she will only have to wear them for a few years. But if I am being honest my heart is aching and the thought of her having these put on everyday and the thought of one more thing she has to work on and one more delay she will have to conquer. Life isn't easy, I get that. But come on...can't ANYTHING be easy for her?
Discouraged, sad, frustrated, angry, feeling helpless and hurting for my little one. Ready God!!! We are ready...please, cut her a break! Let our trip to IL in a few weeks give answers to the retching. Make it so she can start eating orally or drinking her Pediasure orally at least. Let the braces be ordered and let them work quickly so she won't even require a size larger in six months. Help her to start speaking. And teach us what it is that you are trying to show us through all this, because I truly can't understand why else she is going through this other than to teach us something.
Three weeks ago McKenna started walking. A week after she started, Jean, our PT with Myer Center mentioned McKenna may needed braces to help her legs/feet straighten out. She thought we should just do exercises (tip toes and turning her foot on its side) for six months to see if we could avoid them. Today our PT with First Steps, Tara, confirmed that McKenna needs the braces and she doesn't think we should wait.
My heart breaks for McKenna. While these aren't long thick metal braces, or ones that go clear up to her knees, they are still braces - one more thing that she has to go through, one more thing she has to endure and has to have "fixed".
Grateful that McKenna's feet will be fixed through these braces. Grateful there is an answer and we won't be left wondering what to do or what's wrong. Grateful that she will only have to wear them for a few years. But if I am being honest my heart is aching and the thought of her having these put on everyday and the thought of one more thing she has to work on and one more delay she will have to conquer. Life isn't easy, I get that. But come on...can't ANYTHING be easy for her?
Discouraged, sad, frustrated, angry, feeling helpless and hurting for my little one. Ready God!!! We are ready...please, cut her a break! Let our trip to IL in a few weeks give answers to the retching. Make it so she can start eating orally or drinking her Pediasure orally at least. Let the braces be ordered and let them work quickly so she won't even require a size larger in six months. Help her to start speaking. And teach us what it is that you are trying to show us through all this, because I truly can't understand why else she is going through this other than to teach us something.
Tuesday, January 11, 2011
Theeeee Smartest Little Boy
I truly think I have the smarted little boy in the world. He is so much fun to watch explore and learn. He loves his books and is always eager to go pick out a new one from the office to have daddy read to him. He points and the pictures and tells you what things are or the colors or asks, "what's that" only to follow it up with telling you what something is.
This week I have been wearing my Evangel University sweatshirt and Keaton points at each letter and tells me what they are. We have a Dr Seuss ABC book and he goes through and can identify almost every letter. He has a numbers puzzle and can tell you what numbers he is putting in the puzzle. He loves to color and stack and count and sing. He can tell you most of Jack and Jill, Twinkle Twinkle, Row your boat and several others.
And my favorite new thing he does is points and babies and calls them baby Jesus. He got this from the manger. Grandma would point and say baby Jesus so he now relates all babies as being baby jesus. So cute. Can't wait to see what the Lord does with this knowledge he so quickly is gainign and how he will use it to further HIS Kingdom.
This week I have been wearing my Evangel University sweatshirt and Keaton points at each letter and tells me what they are. We have a Dr Seuss ABC book and he goes through and can identify almost every letter. He has a numbers puzzle and can tell you what numbers he is putting in the puzzle. He loves to color and stack and count and sing. He can tell you most of Jack and Jill, Twinkle Twinkle, Row your boat and several others.
And my favorite new thing he does is points and babies and calls them baby Jesus. He got this from the manger. Grandma would point and say baby Jesus so he now relates all babies as being baby jesus. So cute. Can't wait to see what the Lord does with this knowledge he so quickly is gainign and how he will use it to further HIS Kingdom.
She's Walking
Finally mommy can take a breath. McKenna is walking. Over a month ago McKenna had taken steps for our PT, Tara, and was walking room to room without holding on to anything. I was the proudest mommy ever but within an hour of the therapist leaving McKenna stopped walking and since then has required the walker to move around or insists on crawling. It has been so discouraging and nerve racking watching and hoping that she will walk.
Then last week I decided I needed to really start investing more time in getting her to walk. We were going to be seeing the PT at Myer Center, Gene, in two days and McKenna had not made progress since her last visit several weeks prior. I held McKenna by the thighs with her throwing her body, screaming and reaching out to grab onto anythign she could touch but within five or ten minutes she did it...she took a step without holding on to anything, and then another, and then another...and today, almost a week later McKenna is walking. Yes she still likes her walker and holding to the table, but you give a loud cheer and she lets go and claps for herself and walks. I am so grateful for this huge milestone. She is 21 months old and finally walking without holding on to anything. Thank you God.
McKenna is also starting to attempt talking more. She now says Up, Help, and bubble. She is attempting to mimick words you say and if you refuse to answer or acknowledge her request until she says a word she will at least try to say it. This week she has started saying Uh Oh when she drops something, and she says apple and we are working on getting her to say this or that when she is pointing rather than the grunting and loud screaming she does.
McKenna completely stopped taking bites and drinks for multiple days. She would fuss and scream if you even attempted to feed her. This was due to the new direction and changes made by the Chicago team. So we have gone back a few steps and are now feeding her how we were originally because the new way obviously wasn't working.
We go to Chicago in a few weeks and I am just hoping and praying that God will give McKenna relief from the retching and that will allow her to eat/drink orally. Please God, please, please, please.
Then last week I decided I needed to really start investing more time in getting her to walk. We were going to be seeing the PT at Myer Center, Gene, in two days and McKenna had not made progress since her last visit several weeks prior. I held McKenna by the thighs with her throwing her body, screaming and reaching out to grab onto anythign she could touch but within five or ten minutes she did it...she took a step without holding on to anything, and then another, and then another...and today, almost a week later McKenna is walking. Yes she still likes her walker and holding to the table, but you give a loud cheer and she lets go and claps for herself and walks. I am so grateful for this huge milestone. She is 21 months old and finally walking without holding on to anything. Thank you God.
McKenna is also starting to attempt talking more. She now says Up, Help, and bubble. She is attempting to mimick words you say and if you refuse to answer or acknowledge her request until she says a word she will at least try to say it. This week she has started saying Uh Oh when she drops something, and she says apple and we are working on getting her to say this or that when she is pointing rather than the grunting and loud screaming she does.
McKenna completely stopped taking bites and drinks for multiple days. She would fuss and scream if you even attempted to feed her. This was due to the new direction and changes made by the Chicago team. So we have gone back a few steps and are now feeding her how we were originally because the new way obviously wasn't working.
We go to Chicago in a few weeks and I am just hoping and praying that God will give McKenna relief from the retching and that will allow her to eat/drink orally. Please God, please, please, please.
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