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....
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