Grandma is working, so I (grandpa) hi-jacked her blog today.... :o)
Today I get to hang out with a beautiful little princess that we have the privilege to call our granddaughter. I sit here and I watch...watch this little girl in absolute amazement. I watch her playing, I watch her sleeping... I just watch. There is not a second that goes by that I am not completely fascinated by her.
When she smiles, she smiles with her whole face....it's a look of total happiness. Her smile is contagious. You can't help but smile yourself when you look at her. She just glows. I don't know how else to explain it. Each smile wraps me a little tighter around her precious little fingers.
I know Kathy has talked about how Madilyn is here to teach us something, and I believe she is right. Despite her struggles and her ups and downs, she still smiles.
Maybe it's because I'm a little older now than I was when my own children were little, but I can honestly say that little Miss Madilyn has definitely taught me a few things. She has taught me patience, more than I ever imagined. I have always been pretty patient and low-key, but she has shown me that everything happens when the time is right. It may not be when you want it to happen, but it will...hang in there. (She has her grandmother's stubborn side..) She has taught me love.. love to a whole new depth. She is such an amazing little girl. A fighter who is determined to take on the whole world and to leave her mark on everyone who meets her. She has also taught me that anything is possible...never give up.
I watch Kathy with her too... a lot... Now there is an amazing woman. She works tirelessly with Madilyn, taking her to every therapist appointment... constantly working with her on her own type of physical therapy in a way that combines playtime with hard work. She pushes herself and Madilyn to take the next step and never questions it. She doesn't look for notoriety or praise for doing it, yet she has my utmost respect for her perseverance and determination. Unbelievable.... I am extremely lucky to have both of them in my life.
Well.... I think I've babbled on enough for right now...Miss Madilyn and I are going for a walk to enjoy this beautiful day. In parting, I ask you to take a deep breath, look around.... and know... just know... that life is good...
Sunday, April 28, 2013
Tuesday, April 23, 2013
New Toys & changes
Peanugga has a new toy........she now has an exersaucer that she absolutely loves!!! It's the first toy we've had for her that has not needed to be modified so she can fit in it properly. It is helping to build leg strength cause she loves to jump up and down now and it's amazing for her toy interaction. She is soooooo fascinated by the toys on it. There's mirrors and spinning toys and lots for her to chew on. We are very grateful to the friend who brought it to us. Thank you.....
So she's back to gaining weight too. She was 13lbs 7.5 ounces last week and we're hoping for more this week. The GI doctor was very happy with her gaining about 2 ounces every 10 days or so. Hopefully we'll be on a steady gain for a while now.
The feeding/speech therapist brought up some questions for us to ask the doctor at Madilyn's 18month check-up the end of this month. The roof of Madilyn's mouth appears to be an incomplete closed cleft palate. It is really high with a narrow higher section in the middle. The therapist thinks this may be some of the problems with the feeding. She thinks it makes it difficult for her to suck and that it's extremely sensitive to temperature changes. So we'll start with the pediatrician and go from there with those questions and see what we come up with.
We are also attempting to use a bottle again. Milwaukee told us in February that we could stop fighting to get her to use the bottle, at the time we thought that was awesome news, however, getting her to use a cup is proving to be quite challenging so we are trying a bottle and several types of cups to see what works. Even if it is the bottle she chooses at least she's taking liquids by mouth through something other than a spoon. Our theory is "whatever works", 10 ml by bottle is better than nothing but the tube so we'll try it. Most of the things we do are trial and error and tons of persistence. The feeding therapist has us trying things a minimum of 10 times before we are able to say that Madilyn doesn't like it, sometimes even longer.......it has taught me patience, patience, patience.........
So she's back to gaining weight too. She was 13lbs 7.5 ounces last week and we're hoping for more this week. The GI doctor was very happy with her gaining about 2 ounces every 10 days or so. Hopefully we'll be on a steady gain for a while now.
The feeding/speech therapist brought up some questions for us to ask the doctor at Madilyn's 18month check-up the end of this month. The roof of Madilyn's mouth appears to be an incomplete closed cleft palate. It is really high with a narrow higher section in the middle. The therapist thinks this may be some of the problems with the feeding. She thinks it makes it difficult for her to suck and that it's extremely sensitive to temperature changes. So we'll start with the pediatrician and go from there with those questions and see what we come up with.
We are also attempting to use a bottle again. Milwaukee told us in February that we could stop fighting to get her to use the bottle, at the time we thought that was awesome news, however, getting her to use a cup is proving to be quite challenging so we are trying a bottle and several types of cups to see what works. Even if it is the bottle she chooses at least she's taking liquids by mouth through something other than a spoon. Our theory is "whatever works", 10 ml by bottle is better than nothing but the tube so we'll try it. Most of the things we do are trial and error and tons of persistence. The feeding therapist has us trying things a minimum of 10 times before we are able to say that Madilyn doesn't like it, sometimes even longer.......it has taught me patience, patience, patience.........
Saturday, April 13, 2013
Reality checks & baby shoes
So we're up and running again....computer problems should be all fixed now so I can go back to regular posts.
We have been making great progress with the sitting but not so much with the tummy time. She has discovered that if she locks her arms on the lady bug we can't get her on her tummy without great struggles. It can prove to be quite frustrating and comical at the same time. She locks her little arms so tight and hangs on for dear life while cranking her head around to yell at me at the top of her lungs to express her dislike of tummy time. When we do manage to get her on it she pouts, she is the master of the pout to attempt to get her way.
We spent yesterday in Green Bay for a visit to the GI doctor. We got to meet with the dietician to discuss her feedings and caloric intake so when we do need to up the feeds again we can figure out what works best. They are very pleased with how sick she's been since January with the amount of weight she is gaining again and the doctor didn't hesitate to tell us that with all the puking issues that she was afraid of how Madilyn would look. She was thrilled at her activity level and appearance, as well as the progress we have made with the speech/feeding therapist. Our next trip to visit her will be in the middle of June. Sounds to me like they want to see her every about every two months. She also said we could space out Home Nursing to every two weeks if I was comfortable with that, but I am not......that day will come but I'm not ready yet so we'll leave it weekly until the weather gets nicer. Home Nursing has been an awesome resource for me with any question or concerns that I have. They can help with feeding suggestions, tube problems or any other concerns that arise and besides that we love our nurse, she's like family now.
When we were leaving the doctor's office yesterday we had quite the reality check of just how far we've come in a little over six months when the nurse stated how awesome Madilyn looked and how amazing she is doing. She didn't hesitate to tell us that she remembered the first time we brought Madilyn to them in the end of September 2012 and that they did not think that Madilyn would survive at that point in time. She's beautiful, healthy and thriving now, they no longer have that fear and are making long term goals and plans to keep her growing and to make sure her caloric intake can keep up with all of her activity now. It makes me breathe so much easier knowing that. It's also a reminder of just how fragile Madilyn's life really is. There's really no words to explain how it makes me feel.
I knew when my daughter left town that I had no other option but to go to court and gain custody of Madilyn. I knew for months that there were huge problems and she wasn't doing well. It's a reality check to hear others talk about her appearance then and looking back at pictures makes me realize that we saw what we chose. My first eye opener was about a month after we had Madilyn with us and a friend saw her and said "oh look at her, she's not grey anymore, she's healthy looking and pink". We've had repeated reminders when she had the croup in November and her doctor told us that had that happened even a month prior she would not have survived. We even made it through the dreaded virus. When Life Flight came to get us from Portage to take us to Children's Hospital in Milwaukee the experience was life changing. When they took her on the stretcher through the halls of our local hospital there were lines of employees with their heads down wishing us a safe flight and the looks on their faces were so sad. All I could think as I was walking and crying was "they look at us like she's never coming back, dead man walking was what came to mind", people don't understand that Madilyn not making it has never been a thought that I have entertained, and I don't think she has either. It was a reminder when we had our first appointment when we came back and the nurses told us about how upset the doctor was and that he didn't think she's survive. Now when we go and they see her they are so excited.
I always tell my husband that the hardest part about raising Madilyn is not all the work, it's not work to us, it's love, 100% unconditional love, the rewards we receive when she smiles and kisses are HUGE. The hardest part is raising a famous baby. It's wonderful all the lives that Madilyn has touched and all the people who genuinely care about her and follow her progress and I am adjusting (and probably always will be) to the fact that we can't go anywhere without someone wanting to see her, talk to her or touch her. We have people that are complete strangers to us approach and ask "Is that Madilyn?" I'm sure that will never change, even in Green Bay and Milwaukee when we're in the malls people comment. Most people actually think she's really advanced because of her size and the things she's doing while in the stroller or I'm carrying her and then they ask how old she is.........makes me giggle because I've actually had people argue with me that there's no way possible that she's that small at her age. I'm sure that will only increase when she's actually talking and running around and itty bitty still. We're learning to accept the fact that people will always stare and comment. The glasses stir lots of comments, and if we had a nickel for every time someone tells us how cute she is we'd never have a financial care in the world.
To put it all in perspective, the highlight of my trip was discovering that Peanugga finally can wear size 1 shoes. She has her first shoes, cute little pink tennis shoes and little pink dress shoes. In the middle of all the life changing things we are learning, the medical education we receive daily, the progress that we fight so hard for............it's sometimes the tiniest simple thing that completely makes our day............like little pink tennis shoes.
We have been making great progress with the sitting but not so much with the tummy time. She has discovered that if she locks her arms on the lady bug we can't get her on her tummy without great struggles. It can prove to be quite frustrating and comical at the same time. She locks her little arms so tight and hangs on for dear life while cranking her head around to yell at me at the top of her lungs to express her dislike of tummy time. When we do manage to get her on it she pouts, she is the master of the pout to attempt to get her way.
We spent yesterday in Green Bay for a visit to the GI doctor. We got to meet with the dietician to discuss her feedings and caloric intake so when we do need to up the feeds again we can figure out what works best. They are very pleased with how sick she's been since January with the amount of weight she is gaining again and the doctor didn't hesitate to tell us that with all the puking issues that she was afraid of how Madilyn would look. She was thrilled at her activity level and appearance, as well as the progress we have made with the speech/feeding therapist. Our next trip to visit her will be in the middle of June. Sounds to me like they want to see her every about every two months. She also said we could space out Home Nursing to every two weeks if I was comfortable with that, but I am not......that day will come but I'm not ready yet so we'll leave it weekly until the weather gets nicer. Home Nursing has been an awesome resource for me with any question or concerns that I have. They can help with feeding suggestions, tube problems or any other concerns that arise and besides that we love our nurse, she's like family now.
When we were leaving the doctor's office yesterday we had quite the reality check of just how far we've come in a little over six months when the nurse stated how awesome Madilyn looked and how amazing she is doing. She didn't hesitate to tell us that she remembered the first time we brought Madilyn to them in the end of September 2012 and that they did not think that Madilyn would survive at that point in time. She's beautiful, healthy and thriving now, they no longer have that fear and are making long term goals and plans to keep her growing and to make sure her caloric intake can keep up with all of her activity now. It makes me breathe so much easier knowing that. It's also a reminder of just how fragile Madilyn's life really is. There's really no words to explain how it makes me feel.
I knew when my daughter left town that I had no other option but to go to court and gain custody of Madilyn. I knew for months that there were huge problems and she wasn't doing well. It's a reality check to hear others talk about her appearance then and looking back at pictures makes me realize that we saw what we chose. My first eye opener was about a month after we had Madilyn with us and a friend saw her and said "oh look at her, she's not grey anymore, she's healthy looking and pink". We've had repeated reminders when she had the croup in November and her doctor told us that had that happened even a month prior she would not have survived. We even made it through the dreaded virus. When Life Flight came to get us from Portage to take us to Children's Hospital in Milwaukee the experience was life changing. When they took her on the stretcher through the halls of our local hospital there were lines of employees with their heads down wishing us a safe flight and the looks on their faces were so sad. All I could think as I was walking and crying was "they look at us like she's never coming back, dead man walking was what came to mind", people don't understand that Madilyn not making it has never been a thought that I have entertained, and I don't think she has either. It was a reminder when we had our first appointment when we came back and the nurses told us about how upset the doctor was and that he didn't think she's survive. Now when we go and they see her they are so excited.
I always tell my husband that the hardest part about raising Madilyn is not all the work, it's not work to us, it's love, 100% unconditional love, the rewards we receive when she smiles and kisses are HUGE. The hardest part is raising a famous baby. It's wonderful all the lives that Madilyn has touched and all the people who genuinely care about her and follow her progress and I am adjusting (and probably always will be) to the fact that we can't go anywhere without someone wanting to see her, talk to her or touch her. We have people that are complete strangers to us approach and ask "Is that Madilyn?" I'm sure that will never change, even in Green Bay and Milwaukee when we're in the malls people comment. Most people actually think she's really advanced because of her size and the things she's doing while in the stroller or I'm carrying her and then they ask how old she is.........makes me giggle because I've actually had people argue with me that there's no way possible that she's that small at her age. I'm sure that will only increase when she's actually talking and running around and itty bitty still. We're learning to accept the fact that people will always stare and comment. The glasses stir lots of comments, and if we had a nickel for every time someone tells us how cute she is we'd never have a financial care in the world.
To put it all in perspective, the highlight of my trip was discovering that Peanugga finally can wear size 1 shoes. She has her first shoes, cute little pink tennis shoes and little pink dress shoes. In the middle of all the life changing things we are learning, the medical education we receive daily, the progress that we fight so hard for............it's sometimes the tiniest simple thing that completely makes our day............like little pink tennis shoes.
Sunday, April 7, 2013
Computer troubles
I haven't forgotten anyone, we're just having another computer issue and this is not very convenient to do from a phone.
So peanugga is doing good. She's been struggling with a cold all week so every time she coughs she pukes which leads to weight loss instead of gains. She was 13lbs 3 ounces on Friday ..this makes me sad, hopefully this week will be a good move in the right direction.
Peanugga is mobile now too..grandpa modified the height adjustment on her walker so her feet touch the floor so now she can cruise around. She has already figured out how to go backwards! !!
The new cord for the computer has been ordered so hopefully it will come in just a few days and I can do a real post....
Sunday, March 31, 2013
Happy Easter!!!
We're back!!! The Peanugga is doing great.....busy weekend last week we went to Medford, WI to watch auntie Shyanne's first gymnastics competition, it was fun. Of course, after a 4 hour car ride there Madilyn only made it a 1/2 hour before I had to bring her and grandpa to the hotel so she could chill. When the Peanugga decides she's had enough, she definitely turns into the boss.
Monica (physical therapist) was thrilled at the progress she has made with tolerating tummy time and the sitting while she's playing. When the BHK home visitor came this week she brought us the "lady bug" that Monica recommended. It's a lady bug that Madilyn goes on her tummy on and it swivels on top of a playmat with toys to occupy her. She actually does okay on it. The only way we can get her on her tummy is if she's not right on the floor and she has to have something to amuse her or she's not staying there. If she's right on the floor she also just flips herself onto her back so it defeats the purpose. She needs to do the tummy time and use her arms so we can eventually get her crawling. Someday it will happen, hopefully within the next 6 months or so. It would be awesome to have her sitting and crawling by the time she turns 2.
Feedings are progressing too. Liz (the feeding/speech therapist) has us doing spoon feeds at the same time we are tube feeding her so she learns to associate the food going into her mouth with the tummy getting full. She explained to us that the reflexive action of eating is learned in the first few weeks of life and when they don't get that it needs to become a learned behavior. So we learn, very patiently. The GI doc upped Madilyn's feed amounts last week after having a 2 ounce weight loss and this past week she only gained an ounce. She's 13lbs 5ounces now and the GI doc said if she doesn't have substantial gain this coming week they will up them again. This worries me because she pukes.........it's not quite as bad as I expected but it's still puke......the weight gain and progress is slow and frustrating......it takes tons of patience and positive thinking our part as well as diligence in tracking, feeding times and monitoring everything. She's growing though and getting more active every day and we have an appointment with the GI doctor in DePere, WI on Friday the 12th. I am hoping that she's pleased with our progress.
The few days of sunshine and nice temps were great for us. We managed to get out for a couple of walks and Madilyn absolutely loves her stroller rides, for that I am very thankful. It now landed her with a cold but hopefully it'll pass quickly. On one of our walks we went to the grocery store and I was very thankful for the plastic weather cover on the stroller, everyone wants to touch Madilyn, this bothers me. I understand that everyone loves her and follows her progress I just wish they wouldn't touch her. I wish that everyone could understand the health risks with a baby like Madilyn, she gets sick so easily and then it sets everything back. Therapy progress and feedings go ten steps in reverse when she's sick so getting out publicly is difficult when everyone wants to touch her. Come say hi and ask about her but please don't touch or get right in her face. Germs that people carry that don't bother them can make Madilyn very sick very quickly. I joked with my husband that we need to figure out a fan system for inside the weather cover so in July she can still be out in her protective little bubble without roasting....lol
Happy Easter to everyone today!! Easter is about counting our blessings and being together. We are definitely counting our blessings!!
Monica (physical therapist) was thrilled at the progress she has made with tolerating tummy time and the sitting while she's playing. When the BHK home visitor came this week she brought us the "lady bug" that Monica recommended. It's a lady bug that Madilyn goes on her tummy on and it swivels on top of a playmat with toys to occupy her. She actually does okay on it. The only way we can get her on her tummy is if she's not right on the floor and she has to have something to amuse her or she's not staying there. If she's right on the floor she also just flips herself onto her back so it defeats the purpose. She needs to do the tummy time and use her arms so we can eventually get her crawling. Someday it will happen, hopefully within the next 6 months or so. It would be awesome to have her sitting and crawling by the time she turns 2.
Feedings are progressing too. Liz (the feeding/speech therapist) has us doing spoon feeds at the same time we are tube feeding her so she learns to associate the food going into her mouth with the tummy getting full. She explained to us that the reflexive action of eating is learned in the first few weeks of life and when they don't get that it needs to become a learned behavior. So we learn, very patiently. The GI doc upped Madilyn's feed amounts last week after having a 2 ounce weight loss and this past week she only gained an ounce. She's 13lbs 5ounces now and the GI doc said if she doesn't have substantial gain this coming week they will up them again. This worries me because she pukes.........it's not quite as bad as I expected but it's still puke......the weight gain and progress is slow and frustrating......it takes tons of patience and positive thinking our part as well as diligence in tracking, feeding times and monitoring everything. She's growing though and getting more active every day and we have an appointment with the GI doctor in DePere, WI on Friday the 12th. I am hoping that she's pleased with our progress.
The few days of sunshine and nice temps were great for us. We managed to get out for a couple of walks and Madilyn absolutely loves her stroller rides, for that I am very thankful. It now landed her with a cold but hopefully it'll pass quickly. On one of our walks we went to the grocery store and I was very thankful for the plastic weather cover on the stroller, everyone wants to touch Madilyn, this bothers me. I understand that everyone loves her and follows her progress I just wish they wouldn't touch her. I wish that everyone could understand the health risks with a baby like Madilyn, she gets sick so easily and then it sets everything back. Therapy progress and feedings go ten steps in reverse when she's sick so getting out publicly is difficult when everyone wants to touch her. Come say hi and ask about her but please don't touch or get right in her face. Germs that people carry that don't bother them can make Madilyn very sick very quickly. I joked with my husband that we need to figure out a fan system for inside the weather cover so in July she can still be out in her protective little bubble without roasting....lol
Happy Easter to everyone today!! Easter is about counting our blessings and being together. We are definitely counting our blessings!!
Thursday, March 21, 2013
Eating...eating...eating
Peanugga's weight dropped this week...13lbs 4 ounces...2 ounce loss..........this makes me sad. The Home Nurse said it was because last week she was here right after Madilyn's morning feed and that leads to an inaccurate weight gain so from now on she's coming before she gets fed in the morning. Weight loss calls to the GI doctor also lead to increased feed amounts. She now up to 100ml (3.38 ounces) 4 times per day. That's an increase of an entire day feed since she was at 80ml 4 times per day. That also means potentially huge weight gain next week...........and puking...lots of puking until she can tolerate them.
We went to feeding/speech therapy today and this was the first time Liz actually saw Madilyn eat and "play" with her food. She was very excited because Madilyn doesn't hesitate to put her hands in her food or to get her face dirty trying to get it in her mouth. Liz want us to be giving Madilyn table foods every time she gets her tube (bolis) feed during the day. She says it will help her associate the food going into her mouth making her tummy full.....so we get messy four times a day starting now. This could be lots of fun!!
The hubby and I took Madilyn to watch Auntie Shyanne's basketball game today, she was very excited. She used to shut down right away in noisy environments but since the glasses she is completely in awe of everything going on. It was cute cause when someone made a basket and everyone cheered Madilyn gets excited too. It's nice to see such huge progress in areas like this, it's days like today that help me to realize just how far we've come in the past 6 months.
We have a big day tomorrow, the BHK home visitor is coming with the Early On therapists so they can coordinate what they work on with Madilyn and grandpa is going to be here to see what they all do with her.
Hopefully a good nap after therapy and then it's off to another basketball game and Saturday morning we leave for Shyanne's gymnastics meet in Wisconsin. That means pool time for the kids Saturday night and hopefully a little relaxing after several busy days. I won't post again until after we're home on Sunday so I hope everyone has a great weekend and that the weather gets a little warmer so we can take the stroller out.
We went to feeding/speech therapy today and this was the first time Liz actually saw Madilyn eat and "play" with her food. She was very excited because Madilyn doesn't hesitate to put her hands in her food or to get her face dirty trying to get it in her mouth. Liz want us to be giving Madilyn table foods every time she gets her tube (bolis) feed during the day. She says it will help her associate the food going into her mouth making her tummy full.....so we get messy four times a day starting now. This could be lots of fun!!
The hubby and I took Madilyn to watch Auntie Shyanne's basketball game today, she was very excited. She used to shut down right away in noisy environments but since the glasses she is completely in awe of everything going on. It was cute cause when someone made a basket and everyone cheered Madilyn gets excited too. It's nice to see such huge progress in areas like this, it's days like today that help me to realize just how far we've come in the past 6 months.
We have a big day tomorrow, the BHK home visitor is coming with the Early On therapists so they can coordinate what they work on with Madilyn and grandpa is going to be here to see what they all do with her.
Hopefully a good nap after therapy and then it's off to another basketball game and Saturday morning we leave for Shyanne's gymnastics meet in Wisconsin. That means pool time for the kids Saturday night and hopefully a little relaxing after several busy days. I won't post again until after we're home on Sunday so I hope everyone has a great weekend and that the weather gets a little warmer so we can take the stroller out.
Tuesday, March 19, 2013
New Vision = New Fears
So we are making big progress with sitting that came along with the glasses and new vision for Madilyn but along with the progress comes the expected few steps backwards also. We have recently found that when we take her glasses off she clings desperately to us. When I am bringing her up to bed at night or downstairs in the morning I have to hold her very tightly with both arms and she just clings to me. Clings to the point of if I take one arm off to carry my coffee etc. she will try to climb up the front of me crying and hanging on for dear life. It makes me happy and sad at the same time that her glasses have made such a difference. Happy because the progress is great and it's obvious how much of the world they have opened up for her yet sad when I can hear the fear in her cries when it's something as simple as carrying her without them.
Tummy time has also become even more of a challenge than it already was. She absolutely hates being on her tummy. The new therapist has us working with a wedge with a musical light up toy to get her to spend some time on her tummy and we are progressing with that. We were able to have her on the wedge on the bed with music on my cell phone and she didn't freak out this morning. She also has us holding her on our chest and leaning back on the couch or wedge and this makes Madilyn use her arms to push off of us when we go too far back. This also eases her fears cause she is in our arms. It's a constant constant work in progress and I finally feel like we are at a point that one step forward does not equal two steps back. We take ten steps forward and only one or two back. This is awesome...
Over the weekend I ran into some people (several actually) while working that ask about Madilyn and tell me what saints my husband and I are for everything we do with/for Madilyn. We do not view it this way at all, she is our blood, she is our life and she is our love.....I could not love her more if I had given birth to her myself. The bond I have had with Madilyn from the very first moment I saw her is unexplainable.....it's like I have special heartstrings made just for her by god and she definitely knows how to pull them.
The other thing I receive lots of comments about is being so happy and positive all the time even with all the medical trips and therapy. Being happy and positive is a conscious choice I make every single day, it's hard not to be positive when I get to wake up to the happy, smiling, cooing little girl that brightens our days. Therapy and medical trips are part of our life and always will be, it's easier to accept them then it is to be upset or dreading them. It is what it is so we might as well make the best of it...........and make the best of it we do especially when Madilyn gets so excited when she makes progress and we cheer her on...she gets so proud of herself, it's awesome!!!
Tummy time has also become even more of a challenge than it already was. She absolutely hates being on her tummy. The new therapist has us working with a wedge with a musical light up toy to get her to spend some time on her tummy and we are progressing with that. We were able to have her on the wedge on the bed with music on my cell phone and she didn't freak out this morning. She also has us holding her on our chest and leaning back on the couch or wedge and this makes Madilyn use her arms to push off of us when we go too far back. This also eases her fears cause she is in our arms. It's a constant constant work in progress and I finally feel like we are at a point that one step forward does not equal two steps back. We take ten steps forward and only one or two back. This is awesome...
Over the weekend I ran into some people (several actually) while working that ask about Madilyn and tell me what saints my husband and I are for everything we do with/for Madilyn. We do not view it this way at all, she is our blood, she is our life and she is our love.....I could not love her more if I had given birth to her myself. The bond I have had with Madilyn from the very first moment I saw her is unexplainable.....it's like I have special heartstrings made just for her by god and she definitely knows how to pull them.
The other thing I receive lots of comments about is being so happy and positive all the time even with all the medical trips and therapy. Being happy and positive is a conscious choice I make every single day, it's hard not to be positive when I get to wake up to the happy, smiling, cooing little girl that brightens our days. Therapy and medical trips are part of our life and always will be, it's easier to accept them then it is to be upset or dreading them. It is what it is so we might as well make the best of it...........and make the best of it we do especially when Madilyn gets so excited when she makes progress and we cheer her on...she gets so proud of herself, it's awesome!!!
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