Mikella is a little girl with MWS that lives in New Zeland! I just came across her page today when on FB looking in my Mowat-Wilson group. I can't tell you what this did to my heart. You are going to have to experience it for yourself.
Go to: https://sites.google.com/site/mikellamws/Home
On the left you will see
A. Mikella in Action.
Watch the videos and experience the Hope that Mikella gave me today!
Love you!
Wednesday, January 23, 2013
Thursday, January 3, 2013
Happy New Year
Good Morning Everyone! I know it has been a while since my last post but we have been soaking up the time we have had with the kids! I hope you all had a blessed Christmas and a great start to the new year!
Currently, things are going well. Sophie is doing amazingly well. She is wanting to stand all of the time, do flips in the air with her dad, and attempt to get in to 4 point on her own. When I say attempt, it means she likes to get on her knees and rock. She doesn't want to use her hands or arms or else she would be crawling by now.
Sophie also goes to school now. She attends Toddler Group every Tuesday and Thursday. There she is learning to use some sign language, drink from a cup, and to hold on to food herself and eat it. Sophie is also getting therapy still when she is there. Luckily, it is only 1 hour because that is all Sophie is really willing to give. (The picture below wouldn't rotate for me but it is her locker!)
We also moved Shane to Madison schools after Thanksgiving break. Shane was having difficulties behaving at Adrian as well as difficulties with his grades. We kept giving him chances to make the changes needed and he just didn't. From the kitchen window and back deck of our house, we can see Madison school. Shane is able just to walk to school daily. We are still having some issues, but then again, Shane is 12! I expect that it will get worse before it gets better. I do have to say, that I couldn't have hand picked a better big brother for Sophie, he honestly is the BEST!
Sophie has a heart doctor appointment next month and from there, we will go every 6 months or so! I will take it! Sophie doesn't have to see her Hirschsprung's doctor at all unless there is a problem! PTL!! As far as her eyes, well, that is a work in progress. I know that her sight is improving every day, and that is all we can ask for at this point in time. We notice things like Sophie opening her mouth when you put an empty spoon up to her mouth like you are going to feed her. I love that she knows what it is and that she has to open her mouth. I know it is a mean trick, but it warms my heart to see her do it. She is also tracking more. Shane will work with her a lot on this and he becomes so excited to see her follow an object he is holding. Her seizures are under control right now. She still take Topamax twice a day for it. We see the neurologist this month sometime (maybe I should check that out) and he didn't need an EEG with it! That makes me happy!
As a family we are looking forward to 2013. 2012 had some ups and a lot of downs for us. Starting the new year we feel like we will have more ups this year and we can't wait. We are in need of them!
Currently, things are going well. Sophie is doing amazingly well. She is wanting to stand all of the time, do flips in the air with her dad, and attempt to get in to 4 point on her own. When I say attempt, it means she likes to get on her knees and rock. She doesn't want to use her hands or arms or else she would be crawling by now.
Sophie also goes to school now. She attends Toddler Group every Tuesday and Thursday. There she is learning to use some sign language, drink from a cup, and to hold on to food herself and eat it. Sophie is also getting therapy still when she is there. Luckily, it is only 1 hour because that is all Sophie is really willing to give. (The picture below wouldn't rotate for me but it is her locker!)
We also moved Shane to Madison schools after Thanksgiving break. Shane was having difficulties behaving at Adrian as well as difficulties with his grades. We kept giving him chances to make the changes needed and he just didn't. From the kitchen window and back deck of our house, we can see Madison school. Shane is able just to walk to school daily. We are still having some issues, but then again, Shane is 12! I expect that it will get worse before it gets better. I do have to say, that I couldn't have hand picked a better big brother for Sophie, he honestly is the BEST!
.JPG) |
| Shane brushing Sophie's teeth! All 6 of them! |
Sophie has a heart doctor appointment next month and from there, we will go every 6 months or so! I will take it! Sophie doesn't have to see her Hirschsprung's doctor at all unless there is a problem! PTL!! As far as her eyes, well, that is a work in progress. I know that her sight is improving every day, and that is all we can ask for at this point in time. We notice things like Sophie opening her mouth when you put an empty spoon up to her mouth like you are going to feed her. I love that she knows what it is and that she has to open her mouth. I know it is a mean trick, but it warms my heart to see her do it. She is also tracking more. Shane will work with her a lot on this and he becomes so excited to see her follow an object he is holding. Her seizures are under control right now. She still take Topamax twice a day for it. We see the neurologist this month sometime (maybe I should check that out) and he didn't need an EEG with it! That makes me happy!
As a family we are looking forward to 2013. 2012 had some ups and a lot of downs for us. Starting the new year we feel like we will have more ups this year and we can't wait. We are in need of them!
Monday, November 5, 2012
Life is Good
Good Morning Friends! It has been a little bit since I have had the time to post anything.
In the last month, we have brought Sophie home from the hospital, moved in to our new home, several doctor appointments, football games for Shane, and just enjoying our life.
Let's begin with Sophie! I am continually amazed at how well my daughter is doing, at how resilient she is. What she has gone through so far, I bet none of us would come out with the happiness and joy that Sophie has! Is it because she is "simple minded"? Possibly, but I choose embrace it!
Every single day, Sophie is doing better and better. She is wanting to stand ALL OF THE TIME, with assistance of course. That is the one thing that makes her the happiest. Sophie is now sitting up by herself. She is still a little wobbly, but she is getting the hang of it. The only thing she hasn't learned is to use her arms to brace herself or to push herself up yet, so it is funny when she gets off balance and falls over with her hands behind her head! Yes, I do let her fall, she needs to learn somehow! Our little miracle has also learned how to pick up her paci and put it in her mouth...this is HUGE! Sophie has visual impairments that are limiting to her. How limiting, we aren't sure but we do know that she doesn't see very well. I am sure you can just imagine the excitement I felt when we were all sitting at dinner and Sophie was in her high chair. She was playing with her toys and all of a sudden she reaches down, picks up her paci, and sticks it in her mouth!! My jaw dropped and I teared up! What an accomplishment.
We did have a little battle with an infection, but with some Keflex it is doing much better. Her incisions looks fantastic, her breast bone is healing, and she is overall....a new Sophie! I still have my sweet sweet baby girl, but she is doing more and more, and always happy. She has so much more energy, a better appetite (although she is still only 20lbs), and overall, her quality of life seems to be better. All from just closing the ASD hole in her heart!
Shane is adjusting to living in a new house. We love our new place, so much more room and it is a home that I am proud of. Shane didn't want to move because his best friend lived literally down the street from us and they just started walking back and forth to play with one another. Although we are in a different school district, we are keeping Shane in Adrian, as of now! He is struggling with some behavior issues as well as grades. We just had his homeroom switched around because of the quality of kids in his class. The boys mainly. Hopefully we will see things start to improve for Shane both socially and academically. He has a long road to go, but we know he can succeed, if he chooses to. If he chooses not to, we will move him to Madison schools, which is right next door to us!
Shane's football team went undefeated this year. It was a great accomplishment for those boys because they didn't have too many returners for this season. Playing with a new group of kids can sometimes prove to be difficult. Not for these boys. They were unstoppable. It is a little bittersweet knowing that there are a few boys that Shane will never play football with again because of their age difference in school. That for me, is a little sad because I love their mamas!
Dan and I were standing in the kitchen the other day after our new fridge was delivered. We were talking about our new home, the things we have, how well Sophie is doing, and how we have a healthy son, and he looks at me and says, "Life is Good"!
In the last month, we have brought Sophie home from the hospital, moved in to our new home, several doctor appointments, football games for Shane, and just enjoying our life.
Let's begin with Sophie! I am continually amazed at how well my daughter is doing, at how resilient she is. What she has gone through so far, I bet none of us would come out with the happiness and joy that Sophie has! Is it because she is "simple minded"? Possibly, but I choose embrace it!
Every single day, Sophie is doing better and better. She is wanting to stand ALL OF THE TIME, with assistance of course. That is the one thing that makes her the happiest. Sophie is now sitting up by herself. She is still a little wobbly, but she is getting the hang of it. The only thing she hasn't learned is to use her arms to brace herself or to push herself up yet, so it is funny when she gets off balance and falls over with her hands behind her head! Yes, I do let her fall, she needs to learn somehow! Our little miracle has also learned how to pick up her paci and put it in her mouth...this is HUGE! Sophie has visual impairments that are limiting to her. How limiting, we aren't sure but we do know that she doesn't see very well. I am sure you can just imagine the excitement I felt when we were all sitting at dinner and Sophie was in her high chair. She was playing with her toys and all of a sudden she reaches down, picks up her paci, and sticks it in her mouth!! My jaw dropped and I teared up! What an accomplishment.
We did have a little battle with an infection, but with some Keflex it is doing much better. Her incisions looks fantastic, her breast bone is healing, and she is overall....a new Sophie! I still have my sweet sweet baby girl, but she is doing more and more, and always happy. She has so much more energy, a better appetite (although she is still only 20lbs), and overall, her quality of life seems to be better. All from just closing the ASD hole in her heart!
Shane is adjusting to living in a new house. We love our new place, so much more room and it is a home that I am proud of. Shane didn't want to move because his best friend lived literally down the street from us and they just started walking back and forth to play with one another. Although we are in a different school district, we are keeping Shane in Adrian, as of now! He is struggling with some behavior issues as well as grades. We just had his homeroom switched around because of the quality of kids in his class. The boys mainly. Hopefully we will see things start to improve for Shane both socially and academically. He has a long road to go, but we know he can succeed, if he chooses to. If he chooses not to, we will move him to Madison schools, which is right next door to us!
Shane's football team went undefeated this year. It was a great accomplishment for those boys because they didn't have too many returners for this season. Playing with a new group of kids can sometimes prove to be difficult. Not for these boys. They were unstoppable. It is a little bittersweet knowing that there are a few boys that Shane will never play football with again because of their age difference in school. That for me, is a little sad because I love their mamas!
Dan and I were standing in the kitchen the other day after our new fridge was delivered. We were talking about our new home, the things we have, how well Sophie is doing, and how we have a healthy son, and he looks at me and says, "Life is Good"!
Wednesday, October 10, 2012
Blessed Beyond Measure
Good evening all! As I am sitting here typing this, I have a daughter in the other room who is sitting in her toddler rocking/recline seat shaking her plastic keys just 6 days after open heart surgery! How awesome is that!
Surgery went very well and recovery is going better than expected. Sophie still has some issues with her pain management, but all in all, she is doing remarkably well. On Friday morning all of the doctors were doing their rounds and one doctor in particular said that she is doing amazing, better than anticipated. I told him I wasn't surprised. After all, Sophie is a pretty big deal! ;)
Sophie's incision is what the surgical team refers to as a cosmetic incision. Dr. Hirsch-Romano made it low enough and small enough so Sophie can wear scoop neck shirts. I am pleased with how thoughtful she was in making her decisions. Not just for the moment, but for the long term.
As for Dan, Shane, and I, we are feeling relief. We are able to breathe again, even if it is just in this moment. We know there are more things to come with her having MWS, but right now, we are thankful for where Sophie is at. Shane was able to make a Hippo that had every single wire, tube, iv in it that Sophie did and it helped him understand what was going on with his sister. We couldn't be happier with U of M Mott's Children's Hospital.
I come before all of you humbled. Through the past couple of weeks Dan and I have had to learn to just say Thank You. Not just thank you for opening my door, or thanks for taking out the trash, but the kind of Thank You that has you all choked up inside, holding back tears, because Thank You doesn't seem like enough. I can't even begin to describe to each and every one of you the outpouring of love and support you all, everyone, has shown my family. We are overwhelmed with it all, in a good way!
Remember how I asked all of you to pray that God would meet our financial needs? Well, let me just tell you how exactly He did that!
Every single amount of money that came in told us to give thanks to God because He was the one providing and they were so right, He did! We don't have a single financial worry right now with being off with Sophie and I can't tell you how good that feels! Now do you understand how we have had to learn just to say Thank You? Dan and I aren't the type of people who are comfortable with asking for help, so we don't do it. We try to make every happen on our own. We are the type of people that if someone needs help, we will do what we can to make it happen for them. So, to all of you, Thank You!
Sophie is currently in living room, like I said earlier, still clapping her hands and shaking her keys! I just snapped this picture of her just relaxing!
Surgery went very well and recovery is going better than expected. Sophie still has some issues with her pain management, but all in all, she is doing remarkably well. On Friday morning all of the doctors were doing their rounds and one doctor in particular said that she is doing amazing, better than anticipated. I told him I wasn't surprised. After all, Sophie is a pretty big deal! ;)
 |
| Sophie 1 hour post op. The nurses tied a ribbon in her hair before we came back to see her! |
Sophie's incision is what the surgical team refers to as a cosmetic incision. Dr. Hirsch-Romano made it low enough and small enough so Sophie can wear scoop neck shirts. I am pleased with how thoughtful she was in making her decisions. Not just for the moment, but for the long term.
As for Dan, Shane, and I, we are feeling relief. We are able to breathe again, even if it is just in this moment. We know there are more things to come with her having MWS, but right now, we are thankful for where Sophie is at. Shane was able to make a Hippo that had every single wire, tube, iv in it that Sophie did and it helped him understand what was going on with his sister. We couldn't be happier with U of M Mott's Children's Hospital.
I come before all of you humbled. Through the past couple of weeks Dan and I have had to learn to just say Thank You. Not just thank you for opening my door, or thanks for taking out the trash, but the kind of Thank You that has you all choked up inside, holding back tears, because Thank You doesn't seem like enough. I can't even begin to describe to each and every one of you the outpouring of love and support you all, everyone, has shown my family. We are overwhelmed with it all, in a good way!
Remember how I asked all of you to pray that God would meet our financial needs? Well, let me just tell you how exactly He did that!
Every single amount of money that came in told us to give thanks to God because He was the one providing and they were so right, He did! We don't have a single financial worry right now with being off with Sophie and I can't tell you how good that feels! Now do you understand how we have had to learn just to say Thank You? Dan and I aren't the type of people who are comfortable with asking for help, so we don't do it. We try to make every happen on our own. We are the type of people that if someone needs help, we will do what we can to make it happen for them. So, to all of you, Thank You!
Sophie is currently in living room, like I said earlier, still clapping her hands and shaking her keys! I just snapped this picture of her just relaxing!
Tuesday, September 25, 2012
Overwhelmed
Good Morning Friends! The day my family has been dreading is drawing near. It is hard to believe that we are only 1 week and 2 days away from Sophie's surgery. It has been a long time coming but the fact that it is actually here brings up many different thoughts and emotions.
As this day approaches I can see more and more every day the wear it is putting on my husband. As a good friend stated, you can literally see it on Dan's face, so after dinner last night I asked Dan what is main concern with this surgery was. He said that my daughter will die. He said that there is a chance that with them working on her heart that it will stop and the doctors won't be able to get it started again. He then said, if we don't do the surgery my daughter's heart will stop, so either way there is a chance my daughter's heart will stop!
To most people, or some, they would think that it is a little bit irrational to think of the most extreme circumstance since this surgery that is being performed is the safest and most common heart surgery they perform on kids. To most people they would be concerned for their child, but they wouldn't have the same gut wrenching fear of losing....ANOTHER...child. It isn't like we haven't experienced having a child/children die on us. This is a very real fear for Dan, for Shane, for me. When your son asks you if his sister is going to die, you can tell him No, but it is an empty statement. I honestly don't know. Is it possible, yes! Is it plausible, yes! Is it probable, No! Good thing we threw a wrench in Hood's Three P's!
For those of you who haven't seen a little filer floating around facebook, some of Dan's friends at work have decided they wanted to put on a benefit for Sophie so they are doing a Rock-N-Bowl for her on October 27th. It is amazing how this thing is spreading like wildfire, faster I think! I know that isn't a funny joke with all the fires out west that happened this summer, my apologies! :) We are so blessed to have so many wonderful people in our lives that want to help Sophie and us as much as they can. It is a different feeling though being on the receiving end of the deal. We are usually the ones helping others. It am not sure it is a feeling I am comfortable with. It doesn't stop there. Other people at Lenawee Stamping are putting on a car wash this Saturday and the proceeds are going to Sophie. Oh, and there is a bake sale the day of her surgery! How are there so many giving people under one work place? I wish I knew!
With all of the people wanting to help, it is becoming a little overwhelming. Dan heard someone say that they could only afford to help him out once. It made him feel like a charity case and he hates that feeling. I just want everyone one to know, we didn't ask for any of this nor did we expect it. All we did is ask for prayers that all of our needs would be met!
Speaking of needs being met. I do have to share with you these blessings we have received since the last time I posted:
I asked for our financial needs to be met during our time off...I received a blessing here!
With buying a house we had to use up most of our savings and I didn't want to touch the rest of it. A large bill was due and since I have been missing a lot of work for Sophie, money was a little tight....I received Sophie's 1st check from Mental Health Authority for the amount we needed! The next day I received $50 for transportation reimbursement for Sophie's doctor appointments! I just wanted to sing His praises!
Also, my post about SSI sucking, well it is true. We were medically approved because they found Sophie to be medically disabled, but we were financially denied. That means, Sophie receives nothing. If anything happens to where we lose our income, we can reapply. I guess I should just quit my job, have 5 more kids, stop being a responsible adult and contributing part of society, and then, just maybe, Sophie will get the help she needs as she gets older.
Whew, that is a lot of information to read above! Here is a picture to brighten your day!
As this day approaches I can see more and more every day the wear it is putting on my husband. As a good friend stated, you can literally see it on Dan's face, so after dinner last night I asked Dan what is main concern with this surgery was. He said that my daughter will die. He said that there is a chance that with them working on her heart that it will stop and the doctors won't be able to get it started again. He then said, if we don't do the surgery my daughter's heart will stop, so either way there is a chance my daughter's heart will stop!
To most people, or some, they would think that it is a little bit irrational to think of the most extreme circumstance since this surgery that is being performed is the safest and most common heart surgery they perform on kids. To most people they would be concerned for their child, but they wouldn't have the same gut wrenching fear of losing....ANOTHER...child. It isn't like we haven't experienced having a child/children die on us. This is a very real fear for Dan, for Shane, for me. When your son asks you if his sister is going to die, you can tell him No, but it is an empty statement. I honestly don't know. Is it possible, yes! Is it plausible, yes! Is it probable, No! Good thing we threw a wrench in Hood's Three P's!
For those of you who haven't seen a little filer floating around facebook, some of Dan's friends at work have decided they wanted to put on a benefit for Sophie so they are doing a Rock-N-Bowl for her on October 27th. It is amazing how this thing is spreading like wildfire, faster I think! I know that isn't a funny joke with all the fires out west that happened this summer, my apologies! :) We are so blessed to have so many wonderful people in our lives that want to help Sophie and us as much as they can. It is a different feeling though being on the receiving end of the deal. We are usually the ones helping others. It am not sure it is a feeling I am comfortable with. It doesn't stop there. Other people at Lenawee Stamping are putting on a car wash this Saturday and the proceeds are going to Sophie. Oh, and there is a bake sale the day of her surgery! How are there so many giving people under one work place? I wish I knew!
With all of the people wanting to help, it is becoming a little overwhelming. Dan heard someone say that they could only afford to help him out once. It made him feel like a charity case and he hates that feeling. I just want everyone one to know, we didn't ask for any of this nor did we expect it. All we did is ask for prayers that all of our needs would be met!
Speaking of needs being met. I do have to share with you these blessings we have received since the last time I posted:
I asked for our financial needs to be met during our time off...I received a blessing here!
With buying a house we had to use up most of our savings and I didn't want to touch the rest of it. A large bill was due and since I have been missing a lot of work for Sophie, money was a little tight....I received Sophie's 1st check from Mental Health Authority for the amount we needed! The next day I received $50 for transportation reimbursement for Sophie's doctor appointments! I just wanted to sing His praises!
Also, my post about SSI sucking, well it is true. We were medically approved because they found Sophie to be medically disabled, but we were financially denied. That means, Sophie receives nothing. If anything happens to where we lose our income, we can reapply. I guess I should just quit my job, have 5 more kids, stop being a responsible adult and contributing part of society, and then, just maybe, Sophie will get the help she needs as she gets older.
Wednesday, September 12, 2012
Prayers for a Friend
Good Morning! I received a message from a dear friend this morning asking for prayer. She is struggling. It is the same struggle I deal with almost on a daily basis. I ask you to remember her in prayer today. Below is the message she sent to me. I am not thankful for the difficulties that our daughters share, but I am thankful we can walk it together! I love you KEC!
"Today I am struggling. With anger. And sorrow. And grief. An acquaintance is having an ultra sound. She will likely find out she is carrying a healthy baby. She is unwed, not even in a committed relationship. She drank heavily through out the beginning of the pregnancy, smoked both cigarettes and pot. Not that I would EVER wish someone's baby be unhealthy. But, it hurts just the same. And I tell you because I know you have those days. I know you understand my pain and the place in my heart that hurts. Please pray for me today, and for the people I have to come into contact with. I am having a difficult time speaking with patience and love."
Let's life her up today!
Thursday, September 6, 2012
October 4th
October 4th is the date for Sophie's open heart surgery. It will be performed at U of M by Dr. Hirsch. I hear she is really good, let's hope and pray she is. Sophie will be in the hospital for 7-10 days and she will have a 4-6 week recovery time before she is back to normal.
My emotions:
Out of control
Terrified
Highly emotional
sick to my stomach
Head is throbbing
Can't stop crying
Worried
Other things going on:
Buying a house, closing on the 9th or before! Great timing huh!
Football for Shane
NO vacation time left because I have used it for Sophie's medical appointments/surgeries/hospital stays.
Ways to pray:
Sophie comes out of surgery doing well with no complications before, during, or after the surgery.
Sophie's recovery to be better than they expect.
Pray for all Doctors, Nurses, anesthesiologists, that will come in contact with Sophie.
That our finances are met with the lack of work that will be going on for both Dan and I for a few weeks.
That Shane will deal with his emotions through this as well. I know he is terrified as well.
Comfort for all of us.
Safe travels for those that will be heading to and from the hospital.
Closing on the house goes through without hiccups.
That's all I have for now. Love you!
My emotions:
Out of control
Terrified
Highly emotional
sick to my stomach
Head is throbbing
Can't stop crying
Worried
Other things going on:
Buying a house, closing on the 9th or before! Great timing huh!
Football for Shane
NO vacation time left because I have used it for Sophie's medical appointments/surgeries/hospital stays.
Ways to pray:
Sophie comes out of surgery doing well with no complications before, during, or after the surgery.
Sophie's recovery to be better than they expect.
Pray for all Doctors, Nurses, anesthesiologists, that will come in contact with Sophie.
That our finances are met with the lack of work that will be going on for both Dan and I for a few weeks.
That Shane will deal with his emotions through this as well. I know he is terrified as well.
Comfort for all of us.
Safe travels for those that will be heading to and from the hospital.
Closing on the house goes through without hiccups.
That's all I have for now. Love you!
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