Today is one of those days. It is raining and gloomy. The morning was OK, but it felt like another one of those days. Lydia is not eating AGAIN, we are experiencing more throwing up (mostly reflux we believe), and she is whining and off her schedule. No one slept well last night because of Lydia. And she is once again sleeping in the car after dropping the other girls off at school which I know will mess up our day. I received a text message that just makes me sad; it reminds me of broken relationships that I wish were strong. It is just a day that seems impossible to get through.
I was reminded of Zephaniah 3:17 this morning, "The Lord your God is with you. He is mighty to save." I was on Facebook and Dayspring had that on their wall. They also had this saying that just really hit me this morning.
GOD IS ON YOUR SIDE
If you are facing a giant-
Mean, ugly, and unfair.
If it looks impossible-
but looks are deceiving.
God is on your side
and He doesn't just stand by
and cheer you on-
He rushes into the battle
to fight for you!
How encouraging, I really needed to be reminded that no matter what, God is always there. No matter what the mountain is that stands in your way, He is fighting with you. Sometimes the storm never seems to pass. Sometimes you just feel like you need a break. It is not that you are not thankful for what you have, but sometimes it just seems hopeless. Yes, even in those moments He is there fighting alongside you.
One thing that I needed to be reminded of is that He is with you and even if your situation seems next to impossible, He is with you. In my life our mountain seems to have shifted. I give thanks for where our family has come from, the lessons I have learned, and that God is so faithful He brought our family through it. However, I wanted a break. It seems like our storm just shifted and even though we all accomplished so much, there is still so much to do. It seems like the break will never come, but isn't that how life is always? We never seem to have enough of anything and I am learning that I will never have enough of God!
Lydia has transitioned well to table food and now we are dealing with more reflux than ever before. We don't know if it is because of teeth (this is certainly possible with her), we are unsure if she is sick, or if this is just her. One of the side effects from her surgery is reflux and horrible reflux, for the rest of her life. She is completely off her schedule and that just adds so much stress to the entire family. As we dissect these new pieces and try to figure out our daughter it is so hard to think that God is with us. But He is. Just because I have not gotten what I thought I wanted or needed does not mean that He is not there. He has brought us through some dark moments and He will not leave us now.
And this leads me to a question that I have often wondered about, I know I will probably not ever know for sure. But, if we hadn't experienced that grief, and pain, and fear, and turmoil when we heard about the diagnosis of our daughter; Down syndrome, would we love her like we do? In many cases, even though the diagnosis of Down syndrome did not really affect us, it did. When you hear your child can't, your child won't, I would not expect that from your child, I think it makes you fight harder.
When you are given therapists to help you help your child accomplish things that you take for granted, doesn't that just bring you back? If you were anything like me, I never realized what it took to get a baby to sit, why mouthing was so important, the impact of having the babies bring their hands to mid line. It brought me back and allowed me to really understand how complicated this is, how much harder Lydia needs to work, and that it is OK to expect her to accomplish things.
Maybe this is why I feel it is so important to advocate for her. I want people to know that she can do it. I want people to understand her the way I do. I realize that will never be, but maybe those fears and worries and grieving were a must to feel the love for her that I do today? Maybe that is why I have the love for Lydia that I do. When I see her I hear people say she will never do that, she needs to be institutionalized but I see her doing what my other girls do and it just fills me up. It gives me hope beyond anything that I can explain, it energizes me to keep moving forward with her, and it makes me so proud to be her mom, look at what she accomplished, things they said she never would!
Maybe it is like being pregnant after the loss of a child? Maybe it is like having another child after a very premature baby? Maybe it is like getting remarried after loosing your husband? Maybe it is like being a mom after you lost your mom? I don't know, I haven't experienced any of these. Maybe it is facing your fears of what if history repeats itself, what if it is not OK? Then it is reaching that fear and realizing that it is just fine, the baby is OK, this marriage is different but just as strong; that things are good. Maybe it is realizing that you can do this because God is by your side fighting for you?
I have always thought that there is just something different about Lydia, but I am not able to put my finger on it. Maybe it is because I realize what goes into each of her accomplishments, maybe it is because I see her doing things that we were told she would never do, maybe it is because I faced my fears and realized what a special child she is no matter what the diagnosis is, maybe it is because I have been changed because of her to see the world in a whole new way? I would argue it is all of them, but I am so encouraged by knowing that no matter what, God is there to fight alongside of me. No matter what the mountain, the circumstance, the situation, God is there and He won't leave me. That is really good to know, because today I get to put together all of our stuff for transition for Lydia to go to school. No better day to do that than today!
Thursday, March 27, 2014
Sunday, March 16, 2014
Why Do I Love Her?!
As World Down Syndrome Day approaches (March 21) I have wondered why loving Lydia is so much different than my other girls. While the love I have for each one of my beautiful girls is different, is tailored just for them; there is something very different about Lydia. I don't know exactly what that is? So in honor of World Down Syndrome Day I thought I would explore it and allow others to know about "This Kind Of Love!" (This Kind of Love is the theme for the International Down Syndrome Coalition's initiative for creating awareness about Down syndrome!)
Finding out at 20 weeks that there is a chance that our baby would have Down syndrome was frightening. The "news" was delivered in a very good manner. My doctor had called and assured me over and over that this baby has been fearfully and wonderfully made and we would love this child no matter what. He was right, but what was it about hearing your baby may have Down syndrome? I remember crying but not really sure why. I remember feeling scared, but not sure because I was not even sure what Down syndrome was or what it all meant.
I knew one thing for sure, for some odd reason my baby was coming with a label. For some reason my baby's future seemed to be limited and labeled. For someone reason everyone seemed to know what my baby's future would hold besides me. I went to the dreaded Google to see what others had to say about Down syndrome. In all honesty, there was nothing really good that I could find. Why was all of the good stuff at the bottom and the scary (well, outdated and untrue stuff) at the top?
Fear struck me hard. Oh my, what was going to happen now? I wanted a baby, not a label. I wanted to love a child and I wanted them to love me back. I wanted another sibling for my other daughters to play with and laugh with and be best friends with. I wanted to teach and love another child. I was not expecting a label, I was not expecting a complete story as some wanted to give me (stating that they knew the life we would live with having a child with Down syndrome), I did not want a death sentence (so many people told me sorry instead of congratulations). I just wanted a child to love and a child to love me back and did the label of Down syndrome really mean that I could not love my child or they could not love me back?
Then at 33 weeks pregnant a bomb shell was dropped on us. Our baby had MAJOR medical issues. Now that is something more to grieve than Down syndrome. That is something to fear. Our baby, as we found out at 33 weeks we would welcome another girl into our family, Lydia would have a heart defect. They also mentioned something else with her stomach, but were unsure of what exactly it would be until she was born.
The next weeks were consumed with bed rest and doctor appointments and tests. This was scary stuff. Our baby would have to fight for her life. Our Lydia would have to spend time in the hospital. What would that do to our family? What would that mean for her future? I was scared, I wanted this baby so much, I wanted to love her and I wanted her to love me back.
July 25, 2011 at 9PM we welcomed Lydia into this world. She was the most beautiful little girl with a very good set of lungs on her. I fought to hold her for a moment. As soon as she was in my arms she was silent...see she knew who mom was and she was showing me love. She gave me a moment that I needed to get through the next 24 hours. I was instantly in love and I turned on fight mode; we had to do whatever it took to make sure she was OK. See, I had my baby and she did love me back....that is all that I wanted. And there was no label that could describe that moment.
As the next days folded into weeks which rolled into months, we watched our baby girl fight really hard for her life, we watched her accomplish milestone after milestone. We prayed like we never had before, our faith was strengthened, our marriage was challenged, our family was separated. But through it all, she loved each and everyone of us. She was teaching us so much and we, as a family, were complete but changed forever. We would never be the same, but we were so much better! We were stronger, we were able, and we saw life through a whole new lens.
See, Lydia has taught us about what is important in life. She has taught us to slow down and appreciate every step; the smallest ones are the most important too! She has taught us what it is to love with no strings attached. She fills us all so much. She makes us laugh and she completes us as a family. How can one little girl do that? I am not sure, but I know that she has changed our family, she has shown us and taught us and we are complete.
I know that our road is not just Down syndrome but her medical issues play such a big role into everything. Together, Down syndrome and her medical complications make her Lydia, and she is one special girl. She has more love to give than I can even explain. She is a ball of energy and she is always making us laugh. She is the first one to give a hug when someone is hurt, she will even help the other girls when they are on a time-out; crying with them and everything. She is a hard worker and she never gives up. She has a disposition in life that is simply contagious. She is my special angel here on earth. She has changed me in ways that I never thought were possible. She has loved me back in ways that I never thought were possible...that is all I wanted! She is the child I prayed for, she is my answer to prayers.
A label is just that, a label. I remember when I was little and I played the game MASH. I was suppose to have 10 children, live in a mansion, drive a limo, and be married to Zac from Saved by the Bell. That label does not resemble the life I live today, just like the label that many described to me about Down syndrome does not describe Lydia at all. It is the love that describes her and who she is. I can't really put it into words, but she is amazing.
Maybe it is the fears that I faced before knowing who she was that has allowed me to think she is simply amazing. Maybe I needed those fears to realize how simply amazing she is. I don't know, but I could not be more happy and feel anymore blessed that she was chosen to be mine. She is fearfully and wonderfully made, like all of my children, but her "little extra" really does mean something. There is something about her, but it is nothing like what you would expect.
Our life is anything but easy and perfect. However, I could not ask for anything else. I am constantly learning and becoming a better person because of her. Because of that label that I felt was placed on her before she was born, because people felt like her future was already written before she was even born, that is why I am so passionate about creating awareness, about sharing our story. I want the whole world to know how awesome she is. I want the whole world to know how wrong they are by labeling someone who happens to have an extra Chromosome. I want the world to be better for my daughter...she deserves it. So until there is so much awareness about Down syndrome where everyone is accepting of her for who she is, I will continue to share our story and advocate on her behalf. I am so so so so blessed by her!
Here is the video that IDSC has put out! What a great video. I hope you enjoy it. And don't forget World Down Syndrome Day on March 21. Wear your blue and yellow to create awareness for Down syndrome!
https://www.youtube.com/watch?v=XmLuXM-BmPE&feature=youtu.be
Finding out at 20 weeks that there is a chance that our baby would have Down syndrome was frightening. The "news" was delivered in a very good manner. My doctor had called and assured me over and over that this baby has been fearfully and wonderfully made and we would love this child no matter what. He was right, but what was it about hearing your baby may have Down syndrome? I remember crying but not really sure why. I remember feeling scared, but not sure because I was not even sure what Down syndrome was or what it all meant.
I knew one thing for sure, for some odd reason my baby was coming with a label. For some reason my baby's future seemed to be limited and labeled. For someone reason everyone seemed to know what my baby's future would hold besides me. I went to the dreaded Google to see what others had to say about Down syndrome. In all honesty, there was nothing really good that I could find. Why was all of the good stuff at the bottom and the scary (well, outdated and untrue stuff) at the top?
Fear struck me hard. Oh my, what was going to happen now? I wanted a baby, not a label. I wanted to love a child and I wanted them to love me back. I wanted another sibling for my other daughters to play with and laugh with and be best friends with. I wanted to teach and love another child. I was not expecting a label, I was not expecting a complete story as some wanted to give me (stating that they knew the life we would live with having a child with Down syndrome), I did not want a death sentence (so many people told me sorry instead of congratulations). I just wanted a child to love and a child to love me back and did the label of Down syndrome really mean that I could not love my child or they could not love me back?
Then at 33 weeks pregnant a bomb shell was dropped on us. Our baby had MAJOR medical issues. Now that is something more to grieve than Down syndrome. That is something to fear. Our baby, as we found out at 33 weeks we would welcome another girl into our family, Lydia would have a heart defect. They also mentioned something else with her stomach, but were unsure of what exactly it would be until she was born.
The next weeks were consumed with bed rest and doctor appointments and tests. This was scary stuff. Our baby would have to fight for her life. Our Lydia would have to spend time in the hospital. What would that do to our family? What would that mean for her future? I was scared, I wanted this baby so much, I wanted to love her and I wanted her to love me back.
July 25, 2011 at 9PM we welcomed Lydia into this world. She was the most beautiful little girl with a very good set of lungs on her. I fought to hold her for a moment. As soon as she was in my arms she was silent...see she knew who mom was and she was showing me love. She gave me a moment that I needed to get through the next 24 hours. I was instantly in love and I turned on fight mode; we had to do whatever it took to make sure she was OK. See, I had my baby and she did love me back....that is all that I wanted. And there was no label that could describe that moment.
As the next days folded into weeks which rolled into months, we watched our baby girl fight really hard for her life, we watched her accomplish milestone after milestone. We prayed like we never had before, our faith was strengthened, our marriage was challenged, our family was separated. But through it all, she loved each and everyone of us. She was teaching us so much and we, as a family, were complete but changed forever. We would never be the same, but we were so much better! We were stronger, we were able, and we saw life through a whole new lens.
See, Lydia has taught us about what is important in life. She has taught us to slow down and appreciate every step; the smallest ones are the most important too! She has taught us what it is to love with no strings attached. She fills us all so much. She makes us laugh and she completes us as a family. How can one little girl do that? I am not sure, but I know that she has changed our family, she has shown us and taught us and we are complete.
I know that our road is not just Down syndrome but her medical issues play such a big role into everything. Together, Down syndrome and her medical complications make her Lydia, and she is one special girl. She has more love to give than I can even explain. She is a ball of energy and she is always making us laugh. She is the first one to give a hug when someone is hurt, she will even help the other girls when they are on a time-out; crying with them and everything. She is a hard worker and she never gives up. She has a disposition in life that is simply contagious. She is my special angel here on earth. She has changed me in ways that I never thought were possible. She has loved me back in ways that I never thought were possible...that is all I wanted! She is the child I prayed for, she is my answer to prayers.
A label is just that, a label. I remember when I was little and I played the game MASH. I was suppose to have 10 children, live in a mansion, drive a limo, and be married to Zac from Saved by the Bell. That label does not resemble the life I live today, just like the label that many described to me about Down syndrome does not describe Lydia at all. It is the love that describes her and who she is. I can't really put it into words, but she is amazing.
Maybe it is the fears that I faced before knowing who she was that has allowed me to think she is simply amazing. Maybe I needed those fears to realize how simply amazing she is. I don't know, but I could not be more happy and feel anymore blessed that she was chosen to be mine. She is fearfully and wonderfully made, like all of my children, but her "little extra" really does mean something. There is something about her, but it is nothing like what you would expect.
Our life is anything but easy and perfect. However, I could not ask for anything else. I am constantly learning and becoming a better person because of her. Because of that label that I felt was placed on her before she was born, because people felt like her future was already written before she was even born, that is why I am so passionate about creating awareness, about sharing our story. I want the whole world to know how awesome she is. I want the whole world to know how wrong they are by labeling someone who happens to have an extra Chromosome. I want the world to be better for my daughter...she deserves it. So until there is so much awareness about Down syndrome where everyone is accepting of her for who she is, I will continue to share our story and advocate on her behalf. I am so so so so blessed by her!
Here is the video that IDSC has put out! What a great video. I hope you enjoy it. And don't forget World Down Syndrome Day on March 21. Wear your blue and yellow to create awareness for Down syndrome!
https://www.youtube.com/watch?v=XmLuXM-BmPE&feature=youtu.be
Wednesday, March 12, 2014
Eating Tips and Tricks
I have prayed over this post for a long time. I think my fear is that I am not a therapist, I am not a specialist and I don't claim to be one. I don't want someone to take this post like I know what I am doing! Some have been recommended by therapists, some I have read up on, some we just were at our wit's end and it ended up working, some were recommendations. I hope that these tips will help you. Feeding is a long road and only the tough are called to deal with it. It is so difficult to explain to someone what it feels like to not have your kid eat. It is exhausting too, because it is something that your child has to do. There is no quick fix and there is nothing really that you can do other than try. I hope you enjoy these tips and maybe pick up something!
TIP # 1
One thing that was recommended to us by a top speech therapist was to prep your child you were going to take a bite. Say "Lydia, it is time for a bite." And then give the bite. We were not consistent with this and I regret it. I say that because just recently when we were about to give up, when we said this, she would take a bite. It was like it prepared her and she understood what was coming. I think if we would have been more consistent with it from the beginning, it might have been more effective for us. But I can see how this tip and trick is very effective, it did work for us even though we were not consistent with her!
TIP #2
Before we would start the eating process, we used a Nuk brush. This prepared her for eating and woke up her muscles. Because of the low-tone, this engaged her muscles and allowed her to be more prepared for when the spoon was presented.
TIP #3
Consistency with where you feed. We usually always arranged our schedule so we were at home when she ate. I know, such a pain, but we did see her benefit from it a lot. On occasions we would use a different seat on the floor when the other girls ate in front of the TV. However, we tried very hard to set her at the table and eat as a family. I think this was a huge key. It allowed her to understand the process better, and get to know what was happening!
TIP #4
We tried to expose her to as many new flavors as possible. We thought the more exposure she has had, the better it would be. Looking back I have to say that I think that has allowed her to be so open to so many new tastes. We liked to use fresh foods, but they were not always safe. So we liked to use the Munchkin Fresh Feeder. We did find a terrycloth one at Babies R Us. I am not sure who makes that. That was a great option to expose her to more textures in her mouth.
TIP #5
We got a Kindle to allow her to play games, listen to music, and watch movies. As long as she would eat, we would allow her to use it. If she would not eat, we would either take it away until she took another bite, or we would pause the music or video until she ate. This usually distracted her long enough to get several bites. We still use this a lot to help encourage her to eat. One of our favorites are the Minions. She loves music but we had to make sure that she was not just dancing! I would highly recommend an Otter Box or some non-breakable cover to protect your Kindle. Ours often times became air-borne at some point.
TIP #6
Since Lydia is the youngest, her sisters became big motivators. We often times had them feeding her, playing with her, talking with her, singing with her, or encouraging her to eat. She seemed to be very motivated by her sisters. We made that our other daughter's responsibility and explained to them the importance of why we needed to help Lydia eat. We made it a family thing that we all worked together at. That means a tough day affected all of us, but a good day we all were able to celebrate together.
TIP #7
We played lots of games. She liked it a lot when we played hide and seek. Yes, I would hide behind the refrigerator and come out zooming the spoon saying "Lydia, let's take a bite." It was enough to distract her and it worked. We put things on our heads. We used a lot of inflection in our voices to help her eat. We had certain songs (usually made up ones) to encourage her to eat. If she was just playing and not eating, we would no longer play the games. We tried to distract her enough to eat, but not enough that we were just playing.
TIP #8
We had a bucket of toys that she was only allowed to play with at eating time. They were some brightly decorated blocks that she could stack, a pretend feeding set (like a tea set made by Tupperware), a light up toy that would get her attention easily, and dice.
TIP #9
We used a Boogie Board a lot. She loved to trace her hand and draw. Again, we balanced her eating and playing. It distracted her and allowed her to use some other skills she was needing to work on.
TIP #10
We had a feeding doll. We used a Raggedy Ann and Andy doll. We set the doll on a chair facing her and they would take turns taking bites. The doll would even give Lydia a high five. It showed Lydia that others can take bites too. We sometimes did this with the girls, but found that the doll was very motivating for her. We allowed her to feed the doll also.
TIP #11
Keep changing, keep trying things. Most of the recent tips and tricks are things we stumbled upon. We tried to always keep it fun and changing. This seemed to help her keep eating fun and exciting. Yes, it is very exhausting and you feel like you are always pulling another trick from the bag, however, it will connect at some point.
TIP #12
Recently we purchased a Constructive Eating Set. This has changed a lot of things for us. The utensils are shaped like trucks and the plate works with the utensils and the place mat encourages more playing. I think it is an excellent piece for eating. It requires Lydia to use both hands together, so it makes her work on other skills as well. It allows her to play and teaches her in a fun way. We have only had this for about a week, but we love it! It is very successful in our house! www.constructiveeating.com
TIPS AND TRICKS #13
We used Grape seed Oil in her purees to add calories. We found this to be a lighter, heart healthy oil that did not affect her. We were able to add calories without adding volume. This allowed us to help her gain weight while working on her feeding skills. We also used things like Avocados, Tahini paste, and then thickened with potato flakes or oatmeal. All of these varied the texture and taste.
TIPS AND TRICKS #14
We used smoothies to help vary taste and textures. We felt it important to expose Lydia to many flavors, textures, and variety. Even though she usually stuck with the same thing over and over, she was at least tasting things. She ate corn and chicken for a long time. We would try to vary if possible. But we tried to vary everything and expose her to flavors as she would be willing to tolerate.
TIPS AND TRICKS #15
Drinking was very hard for her. She never took a bottle and she still does not drink from an open cup. We found that the Playtex straw cup was a good beginner cup. We liked this one because she could grab it with both hands and we were able to help the liquid come up through the straw.
She now uses a different Playtex cup. We have not pushed too much with others as she seems to do very well with this one. She mainly drinks Pediasure from there.
Recently we found that she would start drinking Danimals. We use the straws from Capri Sun and poke them in the top. She will drink from that. It makes her use more muscles and different ones, so it is a great workout for her. It also is quite spill proof. My Allison likes this as she gets to drink Capri Sun when we need to get more straws (we usually do not have fruit drinks!).
I also drink my water from a straw cup. This allows her to drink from my cup when she wants. It gives her some variation in the size straw and variation in the liquids.
Make it fun for your child. I know easier said than done, but if it is not fun for them they won't be interested. Watch their cues. If they push away, show non-interest, push the plate away, pull away, scream; try again later. And make sure to watch your balance between play and eating. We did not want to just encourage Lydia to play, but we tried to balance that out. Don't give up. Keep trying, keep going. Remember there is only so much you can do, you can only offer, it is your child's responsibility to eat. And GO WITH YOUR MOMMY'S INSTINCT. You truly know your child the best. Make sure that you push for what you think is best for your child!
And lastly, most importantly, give it to God. Don't stress and worry like I did. God has you on this journey for a reason, you have everything you need when you rely on His strength. Sometimes it may feel like you are standing alone, the water is washing over your head, but you are not alone. God is there and He will take you to shore. Give it to Him, allow Him to show you the plan He has for His children. It took me a long time to really understand that, but when I did, it was completely life changing for me. Be thankful in the small bites and the small victories because they are really big things!
TIP # 1
One thing that was recommended to us by a top speech therapist was to prep your child you were going to take a bite. Say "Lydia, it is time for a bite." And then give the bite. We were not consistent with this and I regret it. I say that because just recently when we were about to give up, when we said this, she would take a bite. It was like it prepared her and she understood what was coming. I think if we would have been more consistent with it from the beginning, it might have been more effective for us. But I can see how this tip and trick is very effective, it did work for us even though we were not consistent with her!
TIP #2
Before we would start the eating process, we used a Nuk brush. This prepared her for eating and woke up her muscles. Because of the low-tone, this engaged her muscles and allowed her to be more prepared for when the spoon was presented.
TIP #3
Consistency with where you feed. We usually always arranged our schedule so we were at home when she ate. I know, such a pain, but we did see her benefit from it a lot. On occasions we would use a different seat on the floor when the other girls ate in front of the TV. However, we tried very hard to set her at the table and eat as a family. I think this was a huge key. It allowed her to understand the process better, and get to know what was happening!
TIP #4
We tried to expose her to as many new flavors as possible. We thought the more exposure she has had, the better it would be. Looking back I have to say that I think that has allowed her to be so open to so many new tastes. We liked to use fresh foods, but they were not always safe. So we liked to use the Munchkin Fresh Feeder. We did find a terrycloth one at Babies R Us. I am not sure who makes that. That was a great option to expose her to more textures in her mouth.
TIP #5
We got a Kindle to allow her to play games, listen to music, and watch movies. As long as she would eat, we would allow her to use it. If she would not eat, we would either take it away until she took another bite, or we would pause the music or video until she ate. This usually distracted her long enough to get several bites. We still use this a lot to help encourage her to eat. One of our favorites are the Minions. She loves music but we had to make sure that she was not just dancing! I would highly recommend an Otter Box or some non-breakable cover to protect your Kindle. Ours often times became air-borne at some point.
TIP #6
Since Lydia is the youngest, her sisters became big motivators. We often times had them feeding her, playing with her, talking with her, singing with her, or encouraging her to eat. She seemed to be very motivated by her sisters. We made that our other daughter's responsibility and explained to them the importance of why we needed to help Lydia eat. We made it a family thing that we all worked together at. That means a tough day affected all of us, but a good day we all were able to celebrate together.
TIP #7
We played lots of games. She liked it a lot when we played hide and seek. Yes, I would hide behind the refrigerator and come out zooming the spoon saying "Lydia, let's take a bite." It was enough to distract her and it worked. We put things on our heads. We used a lot of inflection in our voices to help her eat. We had certain songs (usually made up ones) to encourage her to eat. If she was just playing and not eating, we would no longer play the games. We tried to distract her enough to eat, but not enough that we were just playing.
TIP #8
We had a bucket of toys that she was only allowed to play with at eating time. They were some brightly decorated blocks that she could stack, a pretend feeding set (like a tea set made by Tupperware), a light up toy that would get her attention easily, and dice.
TIP #9
We used a Boogie Board a lot. She loved to trace her hand and draw. Again, we balanced her eating and playing. It distracted her and allowed her to use some other skills she was needing to work on.
TIP #10
We had a feeding doll. We used a Raggedy Ann and Andy doll. We set the doll on a chair facing her and they would take turns taking bites. The doll would even give Lydia a high five. It showed Lydia that others can take bites too. We sometimes did this with the girls, but found that the doll was very motivating for her. We allowed her to feed the doll also.
TIP #11
Keep changing, keep trying things. Most of the recent tips and tricks are things we stumbled upon. We tried to always keep it fun and changing. This seemed to help her keep eating fun and exciting. Yes, it is very exhausting and you feel like you are always pulling another trick from the bag, however, it will connect at some point.
TIP #12
Recently we purchased a Constructive Eating Set. This has changed a lot of things for us. The utensils are shaped like trucks and the plate works with the utensils and the place mat encourages more playing. I think it is an excellent piece for eating. It requires Lydia to use both hands together, so it makes her work on other skills as well. It allows her to play and teaches her in a fun way. We have only had this for about a week, but we love it! It is very successful in our house! www.constructiveeating.com
TIPS AND TRICKS #13
We used Grape seed Oil in her purees to add calories. We found this to be a lighter, heart healthy oil that did not affect her. We were able to add calories without adding volume. This allowed us to help her gain weight while working on her feeding skills. We also used things like Avocados, Tahini paste, and then thickened with potato flakes or oatmeal. All of these varied the texture and taste.
TIPS AND TRICKS #14
We used smoothies to help vary taste and textures. We felt it important to expose Lydia to many flavors, textures, and variety. Even though she usually stuck with the same thing over and over, she was at least tasting things. She ate corn and chicken for a long time. We would try to vary if possible. But we tried to vary everything and expose her to flavors as she would be willing to tolerate.
TIPS AND TRICKS #15
Drinking was very hard for her. She never took a bottle and she still does not drink from an open cup. We found that the Playtex straw cup was a good beginner cup. We liked this one because she could grab it with both hands and we were able to help the liquid come up through the straw.
She now uses a different Playtex cup. We have not pushed too much with others as she seems to do very well with this one. She mainly drinks Pediasure from there.
Recently we found that she would start drinking Danimals. We use the straws from Capri Sun and poke them in the top. She will drink from that. It makes her use more muscles and different ones, so it is a great workout for her. It also is quite spill proof. My Allison likes this as she gets to drink Capri Sun when we need to get more straws (we usually do not have fruit drinks!).
I also drink my water from a straw cup. This allows her to drink from my cup when she wants. It gives her some variation in the size straw and variation in the liquids.
Make it fun for your child. I know easier said than done, but if it is not fun for them they won't be interested. Watch their cues. If they push away, show non-interest, push the plate away, pull away, scream; try again later. And make sure to watch your balance between play and eating. We did not want to just encourage Lydia to play, but we tried to balance that out. Don't give up. Keep trying, keep going. Remember there is only so much you can do, you can only offer, it is your child's responsibility to eat. And GO WITH YOUR MOMMY'S INSTINCT. You truly know your child the best. Make sure that you push for what you think is best for your child!
And lastly, most importantly, give it to God. Don't stress and worry like I did. God has you on this journey for a reason, you have everything you need when you rely on His strength. Sometimes it may feel like you are standing alone, the water is washing over your head, but you are not alone. God is there and He will take you to shore. Give it to Him, allow Him to show you the plan He has for His children. It took me a long time to really understand that, but when I did, it was completely life changing for me. Be thankful in the small bites and the small victories because they are really big things!
Saturday, March 8, 2014
Thankful Eating
Many of you who follow this blog know that eating is a very hard thing for us. Lydia does not feel hunger and does not really understand why we keep piling her with food. We have struggled very hard getting her to eat and then gain weight too. It has been tearing me up. I long for the day when I can set my child down and allow her to eat and she will eat. Something most of us take for granted. Usually a child will drink or take something.
Lydia was just inpatient for about two weeks. She had RSV and was in the hospital for five days. We were discharged and a day and a half later were readmitted for pneumonia. She stayed there for another six days. During this entire time she had IVs and would not eat. Would not drink.
I was exhausted. Not just because we were in the hospital. Not just because they thought my daughter was having seizures. Not just because they thought her esophagus had a dilation. Not just because her heart rate drop below 40 beats over 50 times one not. Not just because she was on 4 liters of oxygen, struggling to breathe and super sick. Not just because she was having these horrible pain fits and there was nothing I could do to comfort her for hours at a time. Not just because a nurse felt the need to wake a sleeping baby. But also, we have just come off some VERY rough patches of eating. She was not really gaining weight and it was tough. She showed very little interest in eating and would not drink.
Let me back up a second and explain a little bit about why I became so "obsessed" about calories and intake and amounts and so forth. GI. There, I said it. GI messed me up at their approach, their not listening, their not looking at the patient, and their constant focus on calories and intake. Yes, we journaled, we kept logs, we added oil, we blended with very unhealthy things, we pushed purees, she was on concentrated milk products, we listened to them and did what they said. After all, they were the experts. When we brought up our objections they did not listen and they said that we HAD to count calories and she HAD to have a certain amount of this and that.
They basically scared us to keep the tube in and keep doing as we were doing. They were trying to convince us that she would never have these skills. They were scaring us out of what we felt strongly as parents who know our child the very best. They were the experts and two parents who had little medical training surely did not know anything.
After going against the medical advice from GI, we took the tube out. The rest of her team thought it was OK. That's not an easy choice to make and it certainly is not the easiest thing to do. But for our daughter we knew that she had to get out of this pain and we needed to give her a chance.
GI scared me so much that even after the tube was out I felt the need to push, push, push. I ignored her gestures and kept pushing. I was a freak at making her eat. Surely I could not give her a chance and show us what she had in her. Surely she needed 24 ounces of milk a day along with 1000 more calories. Surely Lydia would never figure out how to adapt to her body.
Talking to a great friend and mentor the other day, she reminded me again that Lydia is God's child and He will take care of her. I must let her go. I thought that I had. I read the Bible (most days if I am being honest), I pray constantly, we try to live in a Godly way, we rely on our faith for everything. But something was not right. I could not let go of eating issues, I was torn between what the world says I have to do (GI mainly) and letting God handle this very tough problem.
After much prayer and knowing that I thought I was letting God handle His child, something needed to change. Thankful eating was what I was going to focus on. I was going to be thankful for every bite, every drink, every taste, every new food she took. I was no longer going to focus on what she did not have, the calories that she should have had, the meat she should have eaten. She is on supplements and meal replacements to get what she needs in a day. She is growing and developing so she shows us she is getting what she needs.
I have a piece of paper that I keep track of what she is doing each day. On the top it reminds me to be thankful for what she is taking. It reads: "Eat, Praise, and Be Thankful. Give praise to the Lord for each bite and drink Lydia takes. For every time she refuses, throws up, pushes away, pray and remember that she is God's child, she is loved more than you love her, He will complete the perfect work He started, and He has plans to prosper her. Give thanks with a grateful heart for every bite she takes!"
It has transformed how I look at eating. It has relaxed me. It allows me to fully give her to God. I worried too much about what she did not eat and I did not give praise for what she was eating. She would take a drink and I would want her to take more. I was never satisfied.
Another key thing for us was that we have transitioned her to table foods 100%. Because she does not have a stomach and she does not feel hunger the way we feel hunger and she does not understand that feeling, we need to teach her that. However, we never allowed her to explore her body and let her have that sensation. Also, purees are 70% water. When our capillaries expand you have that "full" sensation. If you never allow them to contract, there is no hunger feeling. With her not being fed and turning the IV fluids off, we allowed her body to do that. She felt hunger for the first time. And when we allow her to tell us when she is hungry she is drinking more, trying more stuff. We are allowing the natural process to occur. And even though her body is not "normal anatomy" she can still experience this in her way. It is important for her to understand this.
Giving up control and allowing God to do what He needs to do is important. But giving up control and allowing Lydia to control, is working much better. We have not done this for more than five days, but I can't begin to explain the transformation that has taken place.
We have a long ways to go. But she is drinking much more milk, she loves toast, is eating yogurt, drinking yogurt, loves chips, eating some chicken, and tasting a lot of new textures and tastes. We are starting at square one and have a long battle, however.....HUGE strides.
That act of actually having faith....putting it into practice is huge. I know that she is ready now and my faith is at a place that I was ready. I praise God for this. I know we still have a long way to go, but I have learned so much and I am ready to learn more.
While I am so thankful for the advances in science, for the medical technology, there is no equation that my daughter can fit into. That is what GI is missing in their practice. I know it is easier to control calories and amounts with a feeding tube or with purees, but it is not natural. Sometimes, as much as it is hard to do, the control has to be given to the kids and we have to give them a chance. Sometimes the parents know best, they are with these kiddos all of the time and understand their needs and know their wants. I am glad that I learned this now, but I wish I would have known this before. This perspective could have helped us out so much before. But I praise God that He is growing my faith, allowing me to learn, and He continues to give me the wisdom that I need to raise this precious child of His.
I am thankful for her pediatrician and his support of allowing Lydia to show us when she is hungry, to explore new foods and textures. I am so grateful for that support. We are now ready to tackle this huge challenge in a whole different way. I praise God for the sips of milk she had this morning and I look forward to the new flavors she will take today. When it comes time to weigh her on Tuesday, I trust God will take care of His child!
Lydia was just inpatient for about two weeks. She had RSV and was in the hospital for five days. We were discharged and a day and a half later were readmitted for pneumonia. She stayed there for another six days. During this entire time she had IVs and would not eat. Would not drink.
I was exhausted. Not just because we were in the hospital. Not just because they thought my daughter was having seizures. Not just because they thought her esophagus had a dilation. Not just because her heart rate drop below 40 beats over 50 times one not. Not just because she was on 4 liters of oxygen, struggling to breathe and super sick. Not just because she was having these horrible pain fits and there was nothing I could do to comfort her for hours at a time. Not just because a nurse felt the need to wake a sleeping baby. But also, we have just come off some VERY rough patches of eating. She was not really gaining weight and it was tough. She showed very little interest in eating and would not drink.
Let me back up a second and explain a little bit about why I became so "obsessed" about calories and intake and amounts and so forth. GI. There, I said it. GI messed me up at their approach, their not listening, their not looking at the patient, and their constant focus on calories and intake. Yes, we journaled, we kept logs, we added oil, we blended with very unhealthy things, we pushed purees, she was on concentrated milk products, we listened to them and did what they said. After all, they were the experts. When we brought up our objections they did not listen and they said that we HAD to count calories and she HAD to have a certain amount of this and that.
They basically scared us to keep the tube in and keep doing as we were doing. They were trying to convince us that she would never have these skills. They were scaring us out of what we felt strongly as parents who know our child the very best. They were the experts and two parents who had little medical training surely did not know anything.
After going against the medical advice from GI, we took the tube out. The rest of her team thought it was OK. That's not an easy choice to make and it certainly is not the easiest thing to do. But for our daughter we knew that she had to get out of this pain and we needed to give her a chance.
GI scared me so much that even after the tube was out I felt the need to push, push, push. I ignored her gestures and kept pushing. I was a freak at making her eat. Surely I could not give her a chance and show us what she had in her. Surely she needed 24 ounces of milk a day along with 1000 more calories. Surely Lydia would never figure out how to adapt to her body.
Talking to a great friend and mentor the other day, she reminded me again that Lydia is God's child and He will take care of her. I must let her go. I thought that I had. I read the Bible (most days if I am being honest), I pray constantly, we try to live in a Godly way, we rely on our faith for everything. But something was not right. I could not let go of eating issues, I was torn between what the world says I have to do (GI mainly) and letting God handle this very tough problem.
After much prayer and knowing that I thought I was letting God handle His child, something needed to change. Thankful eating was what I was going to focus on. I was going to be thankful for every bite, every drink, every taste, every new food she took. I was no longer going to focus on what she did not have, the calories that she should have had, the meat she should have eaten. She is on supplements and meal replacements to get what she needs in a day. She is growing and developing so she shows us she is getting what she needs.
I have a piece of paper that I keep track of what she is doing each day. On the top it reminds me to be thankful for what she is taking. It reads: "Eat, Praise, and Be Thankful. Give praise to the Lord for each bite and drink Lydia takes. For every time she refuses, throws up, pushes away, pray and remember that she is God's child, she is loved more than you love her, He will complete the perfect work He started, and He has plans to prosper her. Give thanks with a grateful heart for every bite she takes!"
It has transformed how I look at eating. It has relaxed me. It allows me to fully give her to God. I worried too much about what she did not eat and I did not give praise for what she was eating. She would take a drink and I would want her to take more. I was never satisfied.
Another key thing for us was that we have transitioned her to table foods 100%. Because she does not have a stomach and she does not feel hunger the way we feel hunger and she does not understand that feeling, we need to teach her that. However, we never allowed her to explore her body and let her have that sensation. Also, purees are 70% water. When our capillaries expand you have that "full" sensation. If you never allow them to contract, there is no hunger feeling. With her not being fed and turning the IV fluids off, we allowed her body to do that. She felt hunger for the first time. And when we allow her to tell us when she is hungry she is drinking more, trying more stuff. We are allowing the natural process to occur. And even though her body is not "normal anatomy" she can still experience this in her way. It is important for her to understand this.
Giving up control and allowing God to do what He needs to do is important. But giving up control and allowing Lydia to control, is working much better. We have not done this for more than five days, but I can't begin to explain the transformation that has taken place.
We have a long ways to go. But she is drinking much more milk, she loves toast, is eating yogurt, drinking yogurt, loves chips, eating some chicken, and tasting a lot of new textures and tastes. We are starting at square one and have a long battle, however.....HUGE strides.
That act of actually having faith....putting it into practice is huge. I know that she is ready now and my faith is at a place that I was ready. I praise God for this. I know we still have a long way to go, but I have learned so much and I am ready to learn more.
While I am so thankful for the advances in science, for the medical technology, there is no equation that my daughter can fit into. That is what GI is missing in their practice. I know it is easier to control calories and amounts with a feeding tube or with purees, but it is not natural. Sometimes, as much as it is hard to do, the control has to be given to the kids and we have to give them a chance. Sometimes the parents know best, they are with these kiddos all of the time and understand their needs and know their wants. I am glad that I learned this now, but I wish I would have known this before. This perspective could have helped us out so much before. But I praise God that He is growing my faith, allowing me to learn, and He continues to give me the wisdom that I need to raise this precious child of His.
I am thankful for her pediatrician and his support of allowing Lydia to show us when she is hungry, to explore new foods and textures. I am so grateful for that support. We are now ready to tackle this huge challenge in a whole different way. I praise God for the sips of milk she had this morning and I look forward to the new flavors she will take today. When it comes time to weigh her on Tuesday, I trust God will take care of His child!
Tuesday, March 4, 2014
Hospital Doors
I entered the elevator with a handful of items from our hospital stay that kept Lydia entertained. A smile was on my face that could not be wiped, my daughter was finally smiling again feeling well enough to break lose of this place. The doors closed and we went down a floor, the elevator door opened and a man walked on who had tears flowing down his face. He held some woman's belongings close to his heart and looked at the floor. No words had to be uttered and my heart ached for him.
Sometimes those hospital doors just aren't fair. Behind one of those doors could be the happiest feeling in the world, could be the worse pain ever, could be moments of terror and fear, could be painful or something you thought could never happen to you. An entire building full of the unknown, huge fears, hurting people, stories of hope, wonderful celebrations. As each door opens and closes a different story is revealed.
I think back to our time spent in the hospital. Those doors swung open and closed on so many emotions, hard times, painful memories, hurting moments, celebrations, and triumphs. Such mixed emotions when you walked through those doors, such trying times, such turmoil, an unexpected journey that I never thought could happen to us. And through every door you walked there was a different story, there were different pains, there were different heart aches, there were different triumphs and celebrations.
I remember finding out behind one of those hospital doors that we were expecting and the joy that filled our hearts. I remember the first ultra sound and how excited we were. Yet in that same room, months later, came hurt and heart ache as we found out there was something not quite right with our sweet baby. As we entered more and more hospital doors, the stories were different, the times were tough, the pains got worse and there were even times when the door swung open and closed that we celebrated and embraced milestones we never thought were possible.
No matter how that door may swing, there are people who walk through that door as a stranger and become part of your family, they become part of your journey. The nurses, and care partners, and doctors, and support people, and house keepers, and surgeons, and the list goes on. They are strong folks to experience these stories and become your hope and care for your child (or you) in ways that you couldn't. They become more than a "hospital staff member" they are part of your family, they are your friend.
These people experience life and death in the same moment. They may have come from one door where the baby did not make it, they gave hugs of comfort and healing in a families deepest darkest moments. They may enter through another door, moments later, where the news was just received that the Chemo is working; this life will be spared for the moment. They participate in moments of celebration and joy. The story is different through each door, yet the impact is priceless as the story of each patient unfolds.
I think about the hugs and smiles, the tears that have been wiped, not just for me, for Lydia, for my husband, but for Ellen and Allison too. I think of the many shoulders that were there for me to cry on and the tissue given to wipe another tear away. For all who enter that room and are part of this journey. These folks are heroes and often times don't understand the impact on a families life. That hug, that smile, that moment you deprived yourself of lunch or the bathroom to listen for one more second. It makes a difference. That time you just listened as a mother poured her heart out, even if it did not matter to that person, it mattered to that mother.
I am forever grateful for these people who expose themselves of these hospital doors. Who open themselves to stories of hurt and joy. Who experience these feelings along with the families and the patients who give everything to bring a smile, to offer a hug, to listen a little longer. These people who help a child who does not understand what is happening, you will always be part of their journey, their story, you play an important role. Without these people exposing themselves to the hospital doors, these families would be weak, would have little hope, and would be hurting in a time of great hurt.
I think about the many nurses and doctors, the housekeeper who helped with Lydia's recent stay. The impact they made to just listen and care. I hear how Ellen and Allison talk about the nurses and the doctors. How they have become part of our family. They have experienced some fears and worry, but celebrated and triumphed over some of the best moments right alongside our family. We knew you only for a second, but you have made an impact to last a lifetime. Offering care and concern through a tough trial and giving us everything for that moment you were in our room...we thank you!
I reflect on this as we approach three years old with Lydia. We have had therapists who have become part of our lives, part of our family. Soon they will be there no more. We can't just call them when we are struggling, we can't celebrate with them when she reaches a milestone, we won't have that support when times are tough, they can't teach our other girls the most effective ways to play with their sister, they won't have that inside look into our family and help raise this special girl. The house door will swing and a different story will begin.
I just pray that our care takers read this and start to understand the impact that you have had on our family. That when we think back on our journey we have shared in so many memories with strangers, yet family. You walked through that door not knowing who we were, not ever meeting our little girl. You walked out of that door, part of our family, having the pleasure of knowing the sweetest little girl, experiencing our journey; either pain or joy. You have impacted Ellen and Allison in profound ways. We thank you for the care you have given, for loving Lydia as your own. We appreciate you experiencing our story as we have.
Hospital doors are not fair most of the time, but for our family you have made a lasting impact, you have been part of our journey. You have eased our fear and pain of raising a child who has special needs and many medical complications. Thank you never seems like enough. We cannot repay you for the care you have shown to our family, we cannot express enough gratitude for taking the extra time, caring for our entire family as your own.
We know that you were placed there at that specific moment to save our daughter's life by our loving Father. You were given the skills to take care of our family and we are so blessed that God chose you to be part of our journey. Thank you is not enough, but maybe you will start to understand the impact you make on families and lives. How important you are to so many.
As hospital doors continue to swing open and closed, we thank you for what you do. Thank you for walking in a stranger and out as part of our family. Thank you for giving your all to care for our family, to be so special. Thank you for exposing yourself to the stories behind the hospital doors.
Sometimes those hospital doors just aren't fair. Behind one of those doors could be the happiest feeling in the world, could be the worse pain ever, could be moments of terror and fear, could be painful or something you thought could never happen to you. An entire building full of the unknown, huge fears, hurting people, stories of hope, wonderful celebrations. As each door opens and closes a different story is revealed.
I think back to our time spent in the hospital. Those doors swung open and closed on so many emotions, hard times, painful memories, hurting moments, celebrations, and triumphs. Such mixed emotions when you walked through those doors, such trying times, such turmoil, an unexpected journey that I never thought could happen to us. And through every door you walked there was a different story, there were different pains, there were different heart aches, there were different triumphs and celebrations.
I remember finding out behind one of those hospital doors that we were expecting and the joy that filled our hearts. I remember the first ultra sound and how excited we were. Yet in that same room, months later, came hurt and heart ache as we found out there was something not quite right with our sweet baby. As we entered more and more hospital doors, the stories were different, the times were tough, the pains got worse and there were even times when the door swung open and closed that we celebrated and embraced milestones we never thought were possible.
No matter how that door may swing, there are people who walk through that door as a stranger and become part of your family, they become part of your journey. The nurses, and care partners, and doctors, and support people, and house keepers, and surgeons, and the list goes on. They are strong folks to experience these stories and become your hope and care for your child (or you) in ways that you couldn't. They become more than a "hospital staff member" they are part of your family, they are your friend.
These people experience life and death in the same moment. They may have come from one door where the baby did not make it, they gave hugs of comfort and healing in a families deepest darkest moments. They may enter through another door, moments later, where the news was just received that the Chemo is working; this life will be spared for the moment. They participate in moments of celebration and joy. The story is different through each door, yet the impact is priceless as the story of each patient unfolds.
I think about the hugs and smiles, the tears that have been wiped, not just for me, for Lydia, for my husband, but for Ellen and Allison too. I think of the many shoulders that were there for me to cry on and the tissue given to wipe another tear away. For all who enter that room and are part of this journey. These folks are heroes and often times don't understand the impact on a families life. That hug, that smile, that moment you deprived yourself of lunch or the bathroom to listen for one more second. It makes a difference. That time you just listened as a mother poured her heart out, even if it did not matter to that person, it mattered to that mother.
I am forever grateful for these people who expose themselves of these hospital doors. Who open themselves to stories of hurt and joy. Who experience these feelings along with the families and the patients who give everything to bring a smile, to offer a hug, to listen a little longer. These people who help a child who does not understand what is happening, you will always be part of their journey, their story, you play an important role. Without these people exposing themselves to the hospital doors, these families would be weak, would have little hope, and would be hurting in a time of great hurt.
I think about the many nurses and doctors, the housekeeper who helped with Lydia's recent stay. The impact they made to just listen and care. I hear how Ellen and Allison talk about the nurses and the doctors. How they have become part of our family. They have experienced some fears and worry, but celebrated and triumphed over some of the best moments right alongside our family. We knew you only for a second, but you have made an impact to last a lifetime. Offering care and concern through a tough trial and giving us everything for that moment you were in our room...we thank you!
I reflect on this as we approach three years old with Lydia. We have had therapists who have become part of our lives, part of our family. Soon they will be there no more. We can't just call them when we are struggling, we can't celebrate with them when she reaches a milestone, we won't have that support when times are tough, they can't teach our other girls the most effective ways to play with their sister, they won't have that inside look into our family and help raise this special girl. The house door will swing and a different story will begin.
I just pray that our care takers read this and start to understand the impact that you have had on our family. That when we think back on our journey we have shared in so many memories with strangers, yet family. You walked through that door not knowing who we were, not ever meeting our little girl. You walked out of that door, part of our family, having the pleasure of knowing the sweetest little girl, experiencing our journey; either pain or joy. You have impacted Ellen and Allison in profound ways. We thank you for the care you have given, for loving Lydia as your own. We appreciate you experiencing our story as we have.
Hospital doors are not fair most of the time, but for our family you have made a lasting impact, you have been part of our journey. You have eased our fear and pain of raising a child who has special needs and many medical complications. Thank you never seems like enough. We cannot repay you for the care you have shown to our family, we cannot express enough gratitude for taking the extra time, caring for our entire family as your own.
We know that you were placed there at that specific moment to save our daughter's life by our loving Father. You were given the skills to take care of our family and we are so blessed that God chose you to be part of our journey. Thank you is not enough, but maybe you will start to understand the impact you make on families and lives. How important you are to so many.
As hospital doors continue to swing open and closed, we thank you for what you do. Thank you for walking in a stranger and out as part of our family. Thank you for giving your all to care for our family, to be so special. Thank you for exposing yourself to the stories behind the hospital doors.
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