Wednesday, December 28, 2011
K means Fighter. Though we did not name our little man, his name was rightly chosen.
He is one spunky monkey. And very opinionated. A little man of few words. He only speaks when its really necessary. GO! ALL DONE! are his two most uttered words.
He is VERY attached to his pacifier, whom we call Mr. Binks. However, our little man is three and even though his teeth already have suffered a bit of damage due to Mr. Binks, its time for Mr. Binks to start leaving. He uses binks mostly as a chew toy.
Kids with feeding tubes are typically encouraged to use a pacifier since oral stimulation typically ceases due to no longer eating by mouth. However, Kaden, eats and drinks by mouth but still wants to be chewing/sucking on things most of the day. Which developmentally speaking, is appropriate because of his delays.
We have tried a few replacements: Chew Tubes, Teethers shaped similar to pacifers. To which he has had no interest.
Then he got a Little People toy for Christmas. Her name is Maggie. Maggie is now K's best friend. Its only been a few days but he has taken quite an attachment to Maggie. So much so, he no longer is using Mr. Binks during the day.
So I think we have a new milestone. And I think soon Mr. Binks will be able to go away at night as well.
Sunday, December 25, 2011
We are feeling so blessed this Christmas.
Blessed to have a wonderful church family.
Blessed to have three healthy kids this Christmas.
Blessed by being surrounded by friends and family this Christmas season.
Blessed to have toooo many presents under the tree.
Blessed by good food and fellowship. And overly full tummies.
Blessed that Jesus came to this world as a little babe to take away our sin.
Merry Christmas. Blessed indeed.
Friday, December 23, 2011
Momma is in a little funk right now. Nothing bad just random funk. Just feel off. So here's some stream of conscience thoughts.
I think I need more coffee right now.
I am watching the boys watch a little girl that I am watching, play. They are so excited watching her.
Isaiah has been playing more with toys lately. This is super exciting.
Kaden rolls around everywhere. Making oxygen use practically impossible.
Morgann is out of school for the next week and a half.
My boys are endless pits. I am scared to think when they are teenagers.
We were standing in line to see Santa last night at the NH Speedway and there were 19 mo. old twins in front of us. They were HUGE compared to the boys. Not because they were walking but because they were so much taller than my boys.
Kaden wont eat plain fresh spinach anymore. He now has ONE food he wont eat. Isaiah still eats it.
Tuesday, December 20, 2011
My little boy and I were able to come home around 3 a.m. on Saturday morning. A very exhausted and grumpy and sleep deprived Kaden in combination with a nurse who knows us well and a busy ER full of kids needing admitted allowed us to go home and heal at home.
Kaden is doing much better. He is back on room air and only needs a smidge of oxygen when he sleeps (if he decides to keep the cannula on). He is very happy to be home. Even though he is a boy of few words: "Go" and "all done" were two well used words while inpatient. Poor guy.
Please do keep him in your prayers. We are not sure why Kaden started to desat without symptoms. His monitor really did save him. We are thankful for our good care at Elliot. I am trying to put my faith in front of my fear. Kaden is God's kid. I will do my best to be the best mom to Kaden but he is ultimately in God's hands. I have to live in faith, not fear. And right now, its a bit hard. I get very anxious leaving Kaden even to go to the grocery store. I need to put my faith into action and trust God...
Thursday, December 15, 2011
Honestly I don't know what to think of our Kaden boy, this is a new trick from him, he's been sick, has an ear infection.
But I am thankful for our monitor. Pretty sure he's gonna be wearing that thing at night for the next few months to make sure he doesn't do this again. And follow up with pulmonary here at the Elliot.
But we are good. So thankful for our little boy, for the wonderful team of care, and our loving and supportive friends and family who have taken such good care of us. We are so blessed. In the good and in the bad, we are blessed.
Monday, December 12, 2011
When we heard he was back in care (last fall), I was upset that they didn't call us to place him.I found out on Saturday at our Foster Care Christmas Party, he went back into care in Dec 09 - which was in the middle of our now adopted sons huge health crisis. We were in and out of the hospital NON-STOP. We spent around 192 days inpatient during that time period. As much as we loved Little Dude, it was just not the time or place for him to re-join our family. I remember once, on the way to visit Kaden at the hospital, I saw his mom and him walking down the street. I turned around and watched them walk. I had a decent relationship with his mom and wanted to stop her and just chat. But then I realized that I had new important priorities. God had entrusted Kaden to us and I needed to be with him. I drove on, happy to catch a glimpse of his sweet face.
Friday, December 9, 2011
Tuesday, December 6, 2011
But I am excited my love of picture taking is spilling over to my Morgann. She spent about an hour last night snapping shots of Christmas ornaments:) Here are a few shots straight off the camera with no edits (or lots of fill light which I know I overuse shamelessly cause I love bright looking pics!)
Friday, December 2, 2011
So this year, I upped the ante. (Glutton for punishment, perhaps?) And I am working on not only just American only gifts, but trying to buy the majority as local gifts as well. Concord has a Pop Up Holiday Shop, Concord Handmade, with great local gifts for sale. Two of my favorite local businesses owned by two of my best friends are selling there: REDEMPTION SOAP and Fistful of Daisies.
Anyway. I'd just encourage you to buy a few Christmas gifts this year that are local and American made.
I know having kids who have a wish list makes it a bit harder to get them what they want, however, I found a couple of fun things that are American made: Silly Putty, American published Books, and Little Tykes makes quite a few toys in the US. I am thinking of getting the boys this Activity Gym.
Oh, and for the angler in your family. I found this lure business that has some great gift ideas, Salty Buggers. They have some really cool kits where you design your own bait. It looks like a pretty cool project. Rich said he would enjoy doing something like that if he was not already knee-deep in projects. :)
Thursday, December 1, 2011
So this guy.
His name is Rich.
I like him a lot.
He is a great daddy, husband, pastor, and friend.
He just finished building the boys a customized bed. Complete with a little baby jail gate so they can see each other. I just can picture the boys clanking their sippies cup at the bars trying to break free.
We as a family and a church, Grace Haven are embarking on a new exciting journey - combining our sweet Grace Haven family with another church here on the West Side to form a new church. We are really excited about this new adventure. The "other church" South Main Street Church, has a great group of people with great hearts ready to serve. I can't wait to see what God does. Rich will be leading this whole new church as pastor. I know he will do a great job.
After working a year as a milk man to support his pastoring habit, I am thankful he will be able to get to be a full time pastor. And we will get to see a bit more of him. Cause we like that guy!
Wednesday, November 30, 2011
A while back, a medical professional told me:
"Well right now things are going good, but Kaden will always have issues and things will get bad again."
First off, my God is a big God. He is the Great Physician. And I KNOW all things are possible. I believe in miracles. If God wants to heal Kaden 100%, He will. He may choose not to - but I know if He chooses not to heal him 100%, Kaden is still going to live a pretty awesome life. Being differently-abled is not a curse.
Secondly, research shows that much healing can occur in the brain if a child suffers from brain trauma, lack of oxygen, ect. Research also shows that kids with multiple aspirations, once the aspiration problem has been resolved, can regain 100% lung function. AND laryngomalacia, typically effects kids only in the first few years of life, and barely after 5 years of life. Thus, I feel strongly his apnea will be resolved.
and Third. Don't ever tell me my kid is doomed to a life of sickness and disabilities. Just don't. Keep those thoughts to yourself.
Fourth. These boys really like to prove people wrong. Including me.
Believe me. I have had my doubts and worries. If you asked me a year ago, I would have told you I didn't think the boys would ever walk. But they proved me wrong and are taking baby steps as I hold there hands. They will walk. It may be with a gait trainer and later a walker...but they will get there.
Perhaps I am a wee bit competitive. But that helps motivate me as there mom to motivate them.
Our beloved Dr. O. (who I know would never say aloud her doubts and fears )told me a few months ago that she never thought Isaiah would be a little monkey - but he was proving her wrong.
Another time, after seeing a neurologist and then following up six months later the neurologist told me about Isaiah - wow, this is a completely different child.
And then my favorite Elliot hospitalist- Dr. Abrams - Abbey, I never thought Kaden would be sitting here, eating and playing with toys." Little did she know, she was the one who instilled all that hope in me right after we first got Kaden. Even though, she didn't know if Kaden would even live at the time, she whispered gently to my very sick boy: "One day Kaden you will go to school. You will learn math. And the girls will love you." Dr. Abrams taught me a lesson that I will live by every day: Believe in miracles and surround yourself with doctors and nurses who even in their doubts, will support you in your quest to give the best life possible to those little boys.
So here's to my little men who were never supposed to:
-Make it out the NICU
-Tell me their needs through signing/Ipad
(yep they can do all of the above well)
Now for some goals:
-Walk with assistance
-Learn to get from sitting from laying down
Tuesday, November 29, 2011
Or I can just post cute pics of my kids.
Like this girl.
(Taken by the fabulous Sarah Dykens)
This girl. She's such a cool kid. Great big sister. Angry birds junkie. Just an awesome six (gulp, almost 7) year old.
I share more stories about her two little brothers. But this kid is pretty amazing too. She is growing into such a wonderful young lady. Last night she washed dishes for me. I like that she is getting to the age of taking over the dishes washing :) She loves to read to her brothers and to me and Rich.
I am so blessed to have a kid like her!
My boys are not babies.
They are toddlers.
They may LOOK like babies. They may ACT most of the time like babies.
but the thing is. They are not babies.
They are little boys.
Who understand far more than babies.
And this is where I confess - I have been thinking and treating them like babies for too long.
On our recent trip to Virginia we were going to meet Rich's parents at the hotel. But we needed to get gas first. We knew stopping and NOT getting the boys out of the van would make them mad. Rich explained to the boys that we were stopping to get gas and they would have to stay in the van. He told them after we got gas, we would be able to get out a few minutes later.
....and it worked. They listened and understood. Amazing.
We've had them in cribs until last night (well not at my parents) The boys dont move much. They happily sit and play on their mat all day. (Much like our lazy cat) I kind of assumed that they couldn't crawl as really they just sit all day and fuss if we do put them on their tummies They can not get from laying to sitting. We are working on it and I know one day they will get it.
So my story is long I know. I'm getting to the point:)
So the mattress to their soon to be finished bed is on the floor in their room. And they are taking full advantage of their freedom. This morning, when I went in to get them, Isaiah was army crawling towards the door. And at naptime (which instead was playtime) Kaden made his way to the door and then started banging on it to get it.
I underestimate these little dudes. They have learned to adapt to their abilities. And now its time for me to start treating them like toddlers too.
Friday, October 7, 2011
other. Every week, I help with lunch at Morgann's fantastic school -Grace Christian School . Isaiah loves this time. I have a nurse at home with Kaden during this time, so its just me and my little buddy. After lunch is recess and E takes over. Morgann and E's twin G also play some with Zay, but really, its E leading the way. This week, I brought Isaiah's bronco so he could be more mobile and E quickly learned how to help him walk. She lovingly helped move his legs when they got stuck after taking a step. She helped steer him. She spent her whole recess helping and encouraging Zay Zay to walk. No therapist could accomplish what she did during thirty minutes. Zay was all smiles the whole time. He worked hard. After about 20 minutes, she asked if we could lift his seat up some so she could have him go fast. I lifted his seat and they took off through the parking lot. Zay's face totally lit up in delight. The thing is, E. really didn't know that she was doing therapy with Zay Zay. She also didnt realize she sacrificed her fun recess time for therapy. She did it because she loves Zay. It wasn't a chore. And you know what, I need that same attitude as I serve my little people. It is a joy to be there mom - not a chore. Thats an attitude I really need to start taking on with a purpose!
And speaking of my little people....Sesame Street is over...and they want me. And thats my joyful job - to be there for them!
Wednesday, September 7, 2011
Thursday, August 18, 2011
We just got him a stander through Medicaid in July. Within a few weeks he was standing. Super amazing! The stinky thing is, since we just got him a stander, Medicaid wont pay for anymore durable medical equipment (DME) equipment for five more years. So, I set off on a mission to find Mr. I a used gait trainer. New ones range from $1000-$3000. A bit more than what we have on hand for NOW to get him new one. (Sure we could save for a few months, or use K's DME money for one - but I really felt that he needed to start working on walking NOW...rather than 6 mo to a year from now. It took about 6 months for us to get the stander through Medicaid)
I googled "used gait trainers" and low and behold I found a resource right here in NH! I found what looked to be a nice but older model size small gait trainer for $150. I went up the next day to Refurbished Equipment Marketplace in Concord.
Paul at REM was more than helpful. We adjusted the gait trainer down to the smallest sizes possible. But alas, Mr. I was still too small to fit in it. But he loved it anyhow and even took a few small steps. He as all smiles. Paul directed me to another gait trainer - a brand new looking Bronco. I had seen the price tag earlier and new it was way out of our budget for a NOW purchase. I told him that and he said, well, lets just try okay. So we adjusted the Bronco down to the smallest settings possible and put Mr. I in. He fit perfectly. Paul then told me that he thought Mr. I needed this bronco. He asked me what my budget was. I told him that I knew this Bronco was worth a lot more than my budget. He asked again. I told him. He replied: Its yours. We got a $3000 new Bronco for 10% of its worth. Totally, thoroughly blessed.
Mr. I is working on taking steps. He gets totally excited when his big sister Morgann is in the room and tries to follow her around. We are getting there. One small step at a time.
Tuesday, August 2, 2011
Saturday, July 30, 2011
Tuesday, July 12, 2011
It was relaxing.
Saturday, July 2, 2011
Wednesday, June 22, 2011
Monday, June 20, 2011
We are doing well. Enjoying summer. Enjoying Morgann being home from school - and sleeping in a bit:)
We might have some BIG news to announce next week. I'll be sure to post if that is the case.
Wednesday, April 6, 2011
Anyway. Fast forward to Thursday. We get a call for a short term and unique placement situation. Which is pretty crazy that they called because we have two of the most complex kids/cases in NH. (Yeh, we are famous in DCYF land...) The situation was pretty ideal and due to confidentiality all I can say is that its just a for a few weeks and there is no concern for abuse/neglect. So anyway, we prayed about it and despite the fact that we would be crazy to say yes, we still felt we should say yes. So we said yes. So the kiddo arrives on Monday. He looks so familiar to both Rich and me. (Okay so I guess you now know where this story is going!) Anyway. He left his bookbag at his house, so I went over and met his mom and got his bag. I notice she has a Bible on her bedside table. It looked VERY familiar. As did she. We talked a little bit about reading the Bible and praying and then I left. So I was over again today to pick up the kiddo from visiting mom. She knew we went to church, so she packed a bag with church clothes and we started talking about church. She doesn't have a church here in NH. She asked about ours and I told her about Grace Haven and she asked where it was located. After telling her, she replies - Oh, I know where that is! We have gone to a couple of your bounce house parties! I think I met your husband and he gave us some stuff. Pretty cool!
I have a feeling that we will make a good relationship with this family. So far, we have. God works in very unexpected ways. I am excited to see how God works in this family and in ours. Keep us in your prayers as we take care of this kiddo and minister to his family.
Saturday, March 19, 2011
Nothing surrounding the boys happens fast. Nothing....well....they get really sick really fast...but besides that....everything moves s.l.o.w.l.y. To be honest, I am pretty much okay with this slow pace. (Not that I wouldn't be thrilled if they miraculously learned to walk tomorrow!) The court process has been painfully slow too. Nothing has gone easy. (Rich says it is to build up my long suffering! I physically get sick after every court hearing. Its just very hard.)
This week started out bad. 105.3 fever for Thing One. He was lethargic, swollen, somewhat unresponsive, had a terribly high respiratory rate, and refused liquids. I was able to stabilize him enough at home to avoid the E.R. and take him to Dr. O. He had, merely, an ear infection. After two doses of his ear drops, he was left with just a runny nose and no fever. After about 12 hours, he drank again. It just seemed like until Wednesday night, things just were not going well. Nothing seemed to fall into place. Whiny, sick boys ruled my days. We've been having continual viruses since early February. I was feeling weary. We were out of food. It was raining. I also have had no nursing or daycare this week....so I had to do it - go to the grocery store - with all three....in the rain....and it was lunchtime....and you know what....it went okay. No major meltdowns. The kids were all pretty content to eat the free cookie and slice of cheese from the deli. Morgann helped feed the boys while I shopped. It went just fine despite being soaked with cold rain!
On Thursday, the glorious sun made it's appearance. Warm, sunny day at last. Morgann and I went on a jog - just about a mile. The boys loved it. Morgann and I both got some exercise. Then we went to the park. Last year, the park was not much of a hit for the boys. They tolerated the swings for a little bit and then just wanted to be pushed around in the stroller. But then Morgann wanted my attention. I always felt...torn. Wanting to play with Morgann, but NEEDING to attend to two little boys. But this time, what a difference. They both loved the swings. Thing One loved the slides...Thing Two is still warming up...but he will get there...and then they enjoyed watching Morgann swing. They laughed as she went higher and higher. They are so much more aware of their surroundings now. After the park, we walked about another mile and then went home. The boys went to sleep and Morgann went next door to play. It was such a victory of an afternoon. We now have activities that ALL THREE kids can enjoy and be apart of together.
Yesterday was similar - long walks and playing on our playset in the yard. Everyone content.
Today, we tackled Walmart - on a Saturday - and the kids all had fun. Me, eh, I hate Walmart - but to have happy kids and watching them enjoy the trip - that made it worth it. Both boys have extremely low muscle tone. They are the floppiest two year olds I have ever met. But I realized as we were leaving Walmart, that they are becoming so much sturdier. It wasn't until the very end; Thing One flopped over in the cart. Morgann helped him get back upright, and he did a lot of the work to get upright....a small victory for both kids. Morgann who now can help her brother, and Thing One, who now can help himself get out of a flop:)
I have to admit, one of my biggest fears of raising these boys - who, as much as dislike typing it - are disabled - was doing fun stuff together as a family. This week I received such a great gift - HOPE and a victory. We do have fun things we can do together as a family. Our normal may look different, but its okay. Everything may come slowly, but it is coming. The days are getting better. The boys are getting healthier...and one day....courts will be done. Slow...but that’s okay. It’s teaching us a lot.
Thursday, March 10, 2011
Anyway. We had our monthly venture down to beantown today. We picked up some cannolis at Mikes. Got lost. Made it to Children's just in time for K's G/J change....and then headed home again...and missed most of the traffic.
Love Boston cause they saved K. Hate Boston cause I get lost. Love wins for sure:)
Wednesday, March 2, 2011
K. has been getting over a particularly nasty virus - he's been so junky and has been vomiting and needing oxygen so I was even more nervous to do the swallow study today.
Karen met me in radiology and after our typical battles with admissions and consents, we finally were able to move forward with the study. Karen convinced me that even if K. aspirated all foods - it wouldn't mean he would never be able to eat again since he was sick his swallow wouldn't be the best but it would also be beneficial to know how to go forward with his feeding when he is sick.
(Sorry long story) Anyway. K went first and he did SO GOOD! He swallowed all the foods so well. He does have a delayed swallow - meaning he swallows when he moves the food to his esophagus rather than on the back of his tongue....(think I explained that right) Then we moved forward with testing him with Honey Thick liquids - really thick liquids basically! So with the help of Karen, we will move forward with introducing these thickened liquids into his diet. Obviously it won't replace the fluids he needs from his G/J, but its a start. For K. I feel that his chronic congestion is not from foods penetrating his airway. Good news...now if we can find WHY he is always congested/junky besides his laryngomalacia dx.
Mr. I. on the other hand, didnt do as well on his swallow study. He penetrated all liquids - which means all the liquids he drank penetrated his airway. He didn't aspirate them - the went in the airway and then he forced them back out - but its not the best scenario. Basically, he is at a higher risk of aspirating (which he has done in the past) But, we will work with him to drink with a straw which would be safer. While eating all his foods, he leaned forward a little bit before he swallowed, which aided in him safely swallowing all his foods. He did a great job with that and safely eats solids. (great news there!) If we can have him drinking from a straw, we think he will do better at not penetrating his airway and hopefully help with his congestion levels.
So long story....but glad we got the studies done and the boys did pretty well!
Tuesday, March 1, 2011
Wednesday, February 9, 2011
I visited a little one on the pedi floor two weeks ago - and I didn't know all the nurses and they had a new doctor. So we better not have to go back. I am quite content NOT meeting new hospitalists.
But seriously, praise God for a healthy winter! The boys and Morgann have all had this never.ending.cold since the beginning of January. Just snotty/coughy-ness. But they have done well with it. In fact, Miss Morgann is the one who is most bothered by here nagging cough.
Lord willing, we will be heading down to VA again for our February vacation week. I am looking forward to seeing my momma who is recovering from her hip break and surgery. I can't wait to see her and give her a hug!
Tuesday, January 18, 2011
Saturday, January 15, 2011
Wednesday, January 12, 2011
And today we got