Mya is doing great!!! She is weighing more than ever and doing so well! She is finally off all the thickener in her drink and can even have water now!! She was also discharged from Cincinnati Children's Hospital! I started a 4 day a week job at Clarian so Mya is now going to daycare 4 days a week and loves it! Things are finally moving in the right direction in our household!!!
We feel very blessed for all the support we have received over the last 2 & 1/2 years!!! We have a growing, potty trained, intelligent little girl on our hands!!! Could life get any better than that??
Here is a little article from Los Altos Feeding that we did after leaving California last winter! February 2nd will be the "anniversary" that Mya was officially done with tube feedings!!! Although she has no memory of the therapy or being tube fed I still think it will be a special day for us!!!
http://pediatricfeeding.org/testimonial.htm
Happy Holiday!!!!
Friday, December 10, 2010
Friday, August 13, 2010
Has it really been 2 months since my last post??
I can't believe I have not posted anything for the last 2 months!!! But sometimes no news can be good news right! Overall things are going well with Mya! She just celebrated her 2nd Birthday on July 28th and reached 23 lbs. exactly! We went and spent 2 weeks at the program in Evansville and are actually going to spend more time there in September.
Since Mya has been eating everything by mouth a few "new" problems have arised that we are working out. We are trying a medicine now to help stimulate her stomach to empty a bit quicker. (without going into great detail....she was vomiting up handfuls of food that should have been processed hours prior) So basically she has all this old food sitting in her stomach so she does not feel overly hungry. We did a one month trial with little result but have increased the dose of the medication and so far are pretty happy with the result.
When we spent the two weeks in Evansville we worked a lot with making the meal more constructive. She eats in her booster seat at all her meals except for the occasional snack and we used a timer until she got used to sitting down and eating for 20-30 minutes at a time. She totally understood the timer concept and knew that she had to sit and eat until the timer went beep-beep!
She still has volume issues with mixing a lot of drink with food but we are able to manage and she drinks plenty of fluids throughout the day. She is also drinking some juice now which she never did before. We are gradually cutting back the thickener in her milk as well and have not recognized any signs of aspiration. Overall the doctors in Cinci are happy with her growth and so are we! She has had a few head colds over the summer which never seems to help her eating.
She is still lacking in her chewing/swallowing skills. During her evaluation she was placed at the eating skills of an 11 month old. But really she did not eat/drink much at all by mouth for the majority of her life so how could be really expect her skills to be age appropriate. We also have been able to work with her oral sensitivity issues as well.
I have actually started back working on Monday's and Wednesday's at the Health Clinic of Monon which has been great. I work with a great group of people and I think it's been a good opportunity for me! Mya also fractured her leg a few weeks ago and ended up in a cast for a few weeks over her Birthday! If it's not one thing it's another with the poor kiddo! She talks in full sentences now...knows her colors....where she lives...her full name...shapes...etc. She is at the age where they love peek-a-boo and she absolutely loves being outside on the farm!
We thank everyone for their continued prayers for Mya! Her tube site closed in a matter of 4-5 days without any problems at all!!
Since Mya has been eating everything by mouth a few "new" problems have arised that we are working out. We are trying a medicine now to help stimulate her stomach to empty a bit quicker. (without going into great detail....she was vomiting up handfuls of food that should have been processed hours prior) So basically she has all this old food sitting in her stomach so she does not feel overly hungry. We did a one month trial with little result but have increased the dose of the medication and so far are pretty happy with the result.
When we spent the two weeks in Evansville we worked a lot with making the meal more constructive. She eats in her booster seat at all her meals except for the occasional snack and we used a timer until she got used to sitting down and eating for 20-30 minutes at a time. She totally understood the timer concept and knew that she had to sit and eat until the timer went beep-beep!
She still has volume issues with mixing a lot of drink with food but we are able to manage and she drinks plenty of fluids throughout the day. She is also drinking some juice now which she never did before. We are gradually cutting back the thickener in her milk as well and have not recognized any signs of aspiration. Overall the doctors in Cinci are happy with her growth and so are we! She has had a few head colds over the summer which never seems to help her eating.
She is still lacking in her chewing/swallowing skills. During her evaluation she was placed at the eating skills of an 11 month old. But really she did not eat/drink much at all by mouth for the majority of her life so how could be really expect her skills to be age appropriate. We also have been able to work with her oral sensitivity issues as well.
I have actually started back working on Monday's and Wednesday's at the Health Clinic of Monon which has been great. I work with a great group of people and I think it's been a good opportunity for me! Mya also fractured her leg a few weeks ago and ended up in a cast for a few weeks over her Birthday! If it's not one thing it's another with the poor kiddo! She talks in full sentences now...knows her colors....where she lives...her full name...shapes...etc. She is at the age where they love peek-a-boo and she absolutely loves being outside on the farm!
We thank everyone for their continued prayers for Mya! Her tube site closed in a matter of 4-5 days without any problems at all!!
Thursday, May 27, 2010
Mya is officially tube free!!!!
We spent the last couple days going to doctor's appointments at Cincinnati and the hospital in Evansville. It was a long couple of days but well worth the trips! We were able to take Mya's feeding tube out on Tuesday!! (I was actually the one that removed it while the doctor held her down!) She did well and is following her growth curve! The doctors would have preferred to leave the tube in another month or two but she has been getting horrible granulation tissue and I couldn't have her go through skin burning for the next month or two. She did have to have it done right before we took it out to clear up the extra skin but so far so good. It is not leaking much at all. We have to change the bandage 2-3 times a day but other than that it should grow shut on it's own. We go back to Cinci at the end of June for them to check it and make sure she is still growing appropriately. If the site is not closed by the end of June she will probably have to have it surgically closed. Let's pray that doesn't happen!!
What a great day!!! She had a feeding tube since she was 4 1/2 months old so what a change!!
We had her evaluated at the Feeding Clinic in Evansville as planned to see if they could help us along with her feeding skills. Don't get me wrong.....Mya is doing great eating compared to 6 months ago but she does lack some of the basic skills of chewing well...lateralizing food.....etc. She takes very small bites so meals take usually 35-45 minutes. (For example a typical child her age would eat a chicken nugget in 4-5 bites and Mya eats it in 15 or so bites.)
Mya is capable of eating and drinking but needs help fine tuning all the skills she didn't use for the first year and a half of her life. We loved the facility in Evansville and think they can really help her take the last step in her eating problems!
We are so excited for a tube free child and are so thankful for all the prayers along the way! We are waiting to hear back about insurance approval for the Evansville program! We'll keep you posted!
What a great day!!! She had a feeding tube since she was 4 1/2 months old so what a change!!
We had her evaluated at the Feeding Clinic in Evansville as planned to see if they could help us along with her feeding skills. Don't get me wrong.....Mya is doing great eating compared to 6 months ago but she does lack some of the basic skills of chewing well...lateralizing food.....etc. She takes very small bites so meals take usually 35-45 minutes. (For example a typical child her age would eat a chicken nugget in 4-5 bites and Mya eats it in 15 or so bites.)
Mya is capable of eating and drinking but needs help fine tuning all the skills she didn't use for the first year and a half of her life. We loved the facility in Evansville and think they can really help her take the last step in her eating problems!
We are so excited for a tube free child and are so thankful for all the prayers along the way! We are waiting to hear back about insurance approval for the Evansville program! We'll keep you posted!
Saturday, May 8, 2010
Happy Mother's Day!
I think I have to be the proudest mom on the face of the planet!! Mya is doing so well with her eating and drinking I just can't believe it! She ate an entire hot dog tonight!! I am so unbelievably proud of her!
We truly have soo much to be thankful for!! I couldn't have done it without the support of my family and friends!! Everyone has been so amazing!! I feel each day that my worries over Mya's eating are getting less and less. We randomly put her on the scale at home and she is weighing more than she has ever weighed so she is doing great!
I am so grateful for the opportunity to go out to California and get Mya help! Thank you to all those who helped us out financially and supported us! I am keeping all the cards.... pictures.... valentines...etc. to show Mya when she gets older all the people that love her and prayed for her! We are so thankful!! She went from getting over 90% of her calories via feeding tube to being 100% orally eating and drinking!!!
We go back to the doctor at the end of the month so I am really hoping to get the tube taken out. She is getting more granulation tissue built up and I don't see any sense on putting her through skin burning again at all!! So cross your fingers they let us!
Happy Mother's Day to all those great Mommy's out there!! But I have to tell you...I think I was blessed with one of the best Mom's out there!! I love you Mom!!!
We truly have soo much to be thankful for!! I couldn't have done it without the support of my family and friends!! Everyone has been so amazing!! I feel each day that my worries over Mya's eating are getting less and less. We randomly put her on the scale at home and she is weighing more than she has ever weighed so she is doing great!
I am so grateful for the opportunity to go out to California and get Mya help! Thank you to all those who helped us out financially and supported us! I am keeping all the cards.... pictures.... valentines...etc. to show Mya when she gets older all the people that love her and prayed for her! We are so thankful!! She went from getting over 90% of her calories via feeding tube to being 100% orally eating and drinking!!!
We go back to the doctor at the end of the month so I am really hoping to get the tube taken out. She is getting more granulation tissue built up and I don't see any sense on putting her through skin burning again at all!! So cross your fingers they let us!
Happy Mother's Day to all those great Mommy's out there!! But I have to tell you...I think I was blessed with one of the best Mom's out there!! I love you Mom!!!
Monday, May 3, 2010
Nothing new!
Nothing new on our end!! Mya is still chugging along with her eating and drinking. She had chicken and noodles today for lunch! The vomiting at this point is few and far between. I think we have had one in the last 2 weeks! She is able to mix her milk and her food now as well and is doing fine with it!
She is still maintaining her weight (according to our home scale) and maybe even gained a few ounces! We are going for an evaluation at the hospital in Evansville next month to see if they think they can help her at all. But secretly I am hoping we won't have to end up needing their help. We are all ready to enjoy the warm weather that's coming and try to just relax for a change!!
She is still maintaining her weight (according to our home scale) and maybe even gained a few ounces! We are going for an evaluation at the hospital in Evansville next month to see if they think they can help her at all. But secretly I am hoping we won't have to end up needing their help. We are all ready to enjoy the warm weather that's coming and try to just relax for a change!!
Tuesday, April 20, 2010
Cinci Appointment
Overall the appointment with the Feeding Team in Cincinnati went well and was reassuring. We are all not quite ready to take that tube out permanently but we were able to get a new one put in and it fits so much better!
The doctor's were very pleased to see all the progress Mya has made since we were there in November for sure. She went from being like 90% tube fed to eating (although it's with a lot of encouragement) and drinking on her own!
I love Cincinnati because I feel like they look at the whole picture instead of just focusing on a growth chart. I don't need a growth chart to tell me that my kid is small....I just want to know that she is healthy!! Which they think she is!! For her height....she is 93% on her weight! So for her height she weighs a totally appropriate amount.
We are having to work pretty hard at times to encourage Mya to eat her meals but it is happening. We are looking into going to Cincinnati or possibly a hospital in Evansville where an OT....speech therapist....behavioral therapist....etc could work with her for 1...2....3....or how many ever weeks they find appropriate. The full team was meeting after we left so they are going to let me know what they decided within the next week hopefully.
So...we'll see! For now we are going to keep doing what we are doing and add a lot of butter....cream....etc to add some fat to her meals. She has come leaps and bounds in the last few months for sure! They also mentioned a medication that stimulates hunger but right now we are not going to go that far yet. At least we know that their is help out there if and when we need it!
The doctor's were very pleased to see all the progress Mya has made since we were there in November for sure. She went from being like 90% tube fed to eating (although it's with a lot of encouragement) and drinking on her own!
I love Cincinnati because I feel like they look at the whole picture instead of just focusing on a growth chart. I don't need a growth chart to tell me that my kid is small....I just want to know that she is healthy!! Which they think she is!! For her height....she is 93% on her weight! So for her height she weighs a totally appropriate amount.
We are having to work pretty hard at times to encourage Mya to eat her meals but it is happening. We are looking into going to Cincinnati or possibly a hospital in Evansville where an OT....speech therapist....behavioral therapist....etc could work with her for 1...2....3....or how many ever weeks they find appropriate. The full team was meeting after we left so they are going to let me know what they decided within the next week hopefully.
So...we'll see! For now we are going to keep doing what we are doing and add a lot of butter....cream....etc to add some fat to her meals. She has come leaps and bounds in the last few months for sure! They also mentioned a medication that stimulates hunger but right now we are not going to go that far yet. At least we know that their is help out there if and when we need it!
Sunday, April 18, 2010
Mya has been a week on solid table foods now and we are still plugging along!! Overall she is doing great!! We have to make eating fun and sometimes even a game but that's okay for now. She especially does well watching others eat what she is having. I guess she thinks.....well since Mommy is eating it....it can't be that bad! haha!!
Her cousins have been wonderful for her to be around since they are more her age! Emma gives her high fives for bites and we all clap for the kids when they eat so well! We are going to keep the positive comments coming and hope for the best!
She has tried a ton of new foods over the last week....even PIZZA!!!! I thought I would never say that my kid ate pizza!! We leave tomorrow for Cincinnati so I'll be sure to update what happens at the appointment but I'm hoping they are very very pleased with how well she is doing!
Her cousins have been wonderful for her to be around since they are more her age! Emma gives her high fives for bites and we all clap for the kids when they eat so well! We are going to keep the positive comments coming and hope for the best!
She has tried a ton of new foods over the last week....even PIZZA!!!! I thought I would never say that my kid ate pizza!! We leave tomorrow for Cincinnati so I'll be sure to update what happens at the appointment but I'm hoping they are very very pleased with how well she is doing!
Wednesday, April 14, 2010
Best day ever!
Yesterday was by far Mya's best day of eating regular table food since the little squirt was born!!! We are so proud of her!!! So far she has been two whole days with all table food and no purees. We are hoping and praying that this trend continues!!!
Yesterday we went to Wendy's and she ate part of a cheese burger and french fries!!! To be honest she had never eaten the bun....hamburger...and cheese in one bit but yesterday she did!!!! We are all totally excited!!
We have had a few little vomits here and there but nothing that is not under control. We are heading to Cincinnati next Tuesday for them to take a look at her and get a back-up plan in place if this eating does not continue. Plus her button is sticking out way to far and she needs it re-fit.
Although Ben's method's were strict I 100% believe that's what Mya needed to get over this hump. She needed someone to push her and that's exactly what he did. She has overcome a lot of problems in the last few months. We still have a ways to go but we will get there! Trust me...we won't give up until we get there!
For right now we are doing at least 5 smaller meals with her a day until she gets used to eating bigger amounts all at once. Thanks to everyone for their continued prayers! I went to make a quick Wal-Mart trip the other day and ended up there for almost 2 hours because I saw so many people that asked and cared about her! What a great feeling it is to know that Mya is so loved!!
Yesterday we went to Wendy's and she ate part of a cheese burger and french fries!!! To be honest she had never eaten the bun....hamburger...and cheese in one bit but yesterday she did!!!! We are all totally excited!!
We have had a few little vomits here and there but nothing that is not under control. We are heading to Cincinnati next Tuesday for them to take a look at her and get a back-up plan in place if this eating does not continue. Plus her button is sticking out way to far and she needs it re-fit.
Although Ben's method's were strict I 100% believe that's what Mya needed to get over this hump. She needed someone to push her and that's exactly what he did. She has overcome a lot of problems in the last few months. We still have a ways to go but we will get there! Trust me...we won't give up until we get there!
For right now we are doing at least 5 smaller meals with her a day until she gets used to eating bigger amounts all at once. Thanks to everyone for their continued prayers! I went to make a quick Wal-Mart trip the other day and ended up there for almost 2 hours because I saw so many people that asked and cared about her! What a great feeling it is to know that Mya is so loved!!
Tuesday, April 13, 2010
First full meal!
Mya had her first full meal of table food last night!!! She ate an entire meatball, all her potatoes, and all her corn!!! I hope we are slowly but surely making our way to a regular diet for her! Hopefully every day just gets better and better!
Mya had her first tractor ride with Matt yesterday since he started planting. Hopefully we have a smooth spring and things can get back to normal around here! Sometimes I wonder if things really are ever normal....haha!!
Keep those prayers coming for miss Mya!!! She is doing great!
Mya had her first tractor ride with Matt yesterday since he started planting. Hopefully we have a smooth spring and things can get back to normal around here! Sometimes I wonder if things really are ever normal....haha!!
Keep those prayers coming for miss Mya!!! She is doing great!
Friday, April 9, 2010
Update since we have been home!
A little update on Mya since we have been home. She is still off her feeding tube and wanting to drink milk like a champ. She is pretty much maintaining her weight at this point but at least she is not losing. We are really struggling and it has been tough but every week is getting a little better. We have been in close contact with Ben and have sent him feeding footage twice now to get any feedback that may help us out.
Our attempt to keep her healthy miserably failed since she already has a cold...cough...and runny nose. I swear....any little bug the poor thing gets! The extra mucus is just never good for a kid that loves to puke! I know....you totally want to hear about my kids mucus! We have seen a spike in her vomiting since she has gotten a cold but it's manageable. (She is still able to keep enough down to stay hydrated and full of energy for sure!)
I wish I had a better post to type but it is what it is! She is showing a lot of resistance to eating the purees but with time we are slowly seeing her guard go down. We are going to stick with it for a few months and see what happens.
No matter what happens we are going to keep fighting for her!!
Our attempt to keep her healthy miserably failed since she already has a cold...cough...and runny nose. I swear....any little bug the poor thing gets! The extra mucus is just never good for a kid that loves to puke! I know....you totally want to hear about my kids mucus! We have seen a spike in her vomiting since she has gotten a cold but it's manageable. (She is still able to keep enough down to stay hydrated and full of energy for sure!)
I wish I had a better post to type but it is what it is! She is showing a lot of resistance to eating the purees but with time we are slowly seeing her guard go down. We are going to stick with it for a few months and see what happens.
No matter what happens we are going to keep fighting for her!!
Tuesday, March 23, 2010
SWEET HOME INDIANA!!!
We finally made it home last night after being gone for over two months!!! YAY!!! Mya has been off her tube now for 7 weeks!!!! The trip home went pretty smooth but boy were we excited to get to the house!!!! It was almost weird walking in!!!
I think I have a whole new appreciation for our home....family....friends.....you name it!!! I missed home and everything about it and so did Mya!!! We were actually awake until 1:00 in the morning because the kid wouldn't go to sleep and stop playing with her toys!!!!
We made one call to the grandparents and I think as quick as they could find their car keys they were here! What a great family we are surrounded by!! The house was spotless...we had flowers planted in our pots....groceries in the fridge....fresh baked cookies on the counter.....ballons....and a ton of welcome home gifts!!!! We couldn't be happier!!!! Thank you to everyone that has been there for us through this journey!!!!
So far the feedings at home have been going fairly well. We made our first batch of food today as well. We will be feeding her these purees for a few months and then move on to solids so it's going to be several months until things are "normal." But slowly but surely we are making our way to a tube free...eating...drinking...healthy little girl! I will for sure continue to update the blog with all her progress!
We go back to Cincinnati the end of May and by then the tube will for sure be coming out!
Wanted to just write a quick update but know I have to unpack while the little critter is napping!!! God Bless!
I think I have a whole new appreciation for our home....family....friends.....you name it!!! I missed home and everything about it and so did Mya!!! We were actually awake until 1:00 in the morning because the kid wouldn't go to sleep and stop playing with her toys!!!!
We made one call to the grandparents and I think as quick as they could find their car keys they were here! What a great family we are surrounded by!! The house was spotless...we had flowers planted in our pots....groceries in the fridge....fresh baked cookies on the counter.....ballons....and a ton of welcome home gifts!!!! We couldn't be happier!!!! Thank you to everyone that has been there for us through this journey!!!!
So far the feedings at home have been going fairly well. We made our first batch of food today as well. We will be feeding her these purees for a few months and then move on to solids so it's going to be several months until things are "normal." But slowly but surely we are making our way to a tube free...eating...drinking...healthy little girl! I will for sure continue to update the blog with all her progress!
We go back to Cincinnati the end of May and by then the tube will for sure be coming out!
Wanted to just write a quick update but know I have to unpack while the little critter is napping!!! God Bless!
Saturday, March 20, 2010
So Excited!
We are still coming home on Monday and can't hardly wait!!!! We have a long road ahead of us but it will all be worth it in the end!!! Thanks again to all our supporters!!! We couldn't have done it without you!! There really is no place like home!
Tuesday, March 16, 2010
We're Coming Home!!!!
We officially booked our flight today to come home on Monday the 22nd!!!! We are sooo excited to get back to Indiana!!! We have the best family and friends anyone could ask for and are so thankful for each and every one of you!!!
I can't believe we are actually going to be packing up in just a few short days!!! It feels like we have been here for forever!! I'm sure as soon as the plane touches down we will feel right back at home!!! Can't wait!!!
I can't believe we are actually going to be packing up in just a few short days!!! It feels like we have been here for forever!! I'm sure as soon as the plane touches down we will feel right back at home!!! Can't wait!!!
Monday, March 15, 2010
6 Weeks....No tube!!!
Mya has now been 6 full weeks without use of her feeding tube! After a bit of a rough weekend we went and spent the day at the Feeding Clinic again today. Hopefully tomorrow gets even better and we can still plan to come home on the 22nd! We can't wait to get home especially since the weather is getting so much better!
Matt is anxious to get home and get back in the groove of working! He has been so great while we have been here and I know will continue to support Mya and I when we get home! Mya has been so used to having her Daddy around everyday it's going to be an adjustment for her!
She has lost a bit of weight from her very top but still well over 21 pounds!! We are going to have her weight checked every week and make sure she is getting enough calories. We have also noticed an increase in her interest in eating "normal" food.
So we definitely had a bump over the weekend but overall we still feel great about the process!
Matt is anxious to get home and get back in the groove of working! He has been so great while we have been here and I know will continue to support Mya and I when we get home! Mya has been so used to having her Daddy around everyday it's going to be an adjustment for her!
She has lost a bit of weight from her very top but still well over 21 pounds!! We are going to have her weight checked every week and make sure she is getting enough calories. We have also noticed an increase in her interest in eating "normal" food.
So we definitely had a bump over the weekend but overall we still feel great about the process!
Thursday, March 11, 2010
Day 2 On Our Own!
Mya had a record meal tonight at supper!!!! We did the meal in 20 minutes and 47 seconds!!! That's the best we have done thus far!!! Things are definitely looking up around here! I think we are going to have a bad meal here and there but overall I think we can totally handle this when we get home! If we run into problems we will video tape the meal and upload it for Ben to watch or just do a live web cam meal with him so he can help us!
I think we made a great decision by coming here! Ben has been amazing!! He is so excited for us and has had us call him after every meal for the last two days to make sure we are getting along okay!! Talk about support!!!
We are still feeling the love from back home and got some really nice cards and packages this week!!! Thank you to everyone that has thought and prayed for us over the last 2 months!!! Mya has been over 5 weeks without use of her tube and there is no going back now!!
We can't wait to get home!!!! I can't say it enough! I am looking forward to getting things back to normal and enjoying our time with our healthy little girl!!! No more doctor's appointments....no more therapy appointments.....no more tests!!!! The only thing left to do is get that tube officially out of her belly!
Thank you again and look out Indiana the Holderly's are flying home really soon!!!!! YAY!!!!
I think we made a great decision by coming here! Ben has been amazing!! He is so excited for us and has had us call him after every meal for the last two days to make sure we are getting along okay!! Talk about support!!!
We are still feeling the love from back home and got some really nice cards and packages this week!!! Thank you to everyone that has thought and prayed for us over the last 2 months!!! Mya has been over 5 weeks without use of her tube and there is no going back now!!
We can't wait to get home!!!! I can't say it enough! I am looking forward to getting things back to normal and enjoying our time with our healthy little girl!!! No more doctor's appointments....no more therapy appointments.....no more tests!!!! The only thing left to do is get that tube officially out of her belly!
Thank you again and look out Indiana the Holderly's are flying home really soon!!!!! YAY!!!!
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