We had a great holiday with our friends and family! Mya LOVED opening gifts and of course got way too many!! We are so thankful for the wonderful family we are surrounded by!!!
Mya's personality is just booming! She is a crazy and very active kid!! She was just picking her nose earlier today and holding up her finger telling me booger!!! I think Daddy must have taught her that!!! She absolutely loves books and learning new words! She amazes me every day with what she remembers. She can say everyone's name in our immediate family and adores all of her cousins. We keep pictures of everyone on the fridge so daily she points and calls everyone's name out!
One thing is for sure.....she is Daddy's little girl!!! We laugh because she actually loves tractors and playing out in the shop with Matt. You can't mention outside without her running to the door!
We are still struggling with Mya's eating issues. The First Steps program is discharging her from their care as of this week. So...in a sense I feel like I have been left to deal with all the issues on my own. They basically say she can now chew and lateralize the food appropriately. She is safe to drink thickened liquids and can do so. So....basically we have a child that can eat and drink but is still dependent on a tube.
For over a year now Mya has not had to eat and drink on her own. We actually did a 2 day weaning trial to hopefully increase her eating and drinking. In a nut shell....she didn't get milk through her tube for 2 days (instead we gave her pedialyte to keep her hydrated). People do this in hopes that it will basically get the child hungry and thirty enough to initiate it on their own. After 2 days Mya's eating had at least doubled and she drank 9 1/2 ounces of milk on her own.
I was completely amazed by her eating and drinking. We had no vomiting and no gagging!! I felt like she actually wanted to eat. I was not having to force feed my child! After several days back on track from our weaning trial we took Mya to get a weight check since it had been 2 months since her last appointment with her pediatrician. Not to our surprise Mya weighed only 19 lbs. 9 oz. Only 1 oz. gained in over 2 months!!!!
For several months I had been in contact with a therapist that thought he could really help Mya. After basically only half a pound weight gain over the last 6 months I had to come to reality and had to realize that what we are doing is not working. She is still only eating tablespoons of food a day and drinking a few ounces here and there. Both the therapist in Indy and through First Steps basically don't know what else to do to the poor kid so Matt and I were left with a huge decision.
Well....the decision we made is to take Mya to see Mr. Zimmerman and hope that he can help her. He has reviewed all her medical records, has talked with me on many occasions, and we also mailed video footage of her during meals. He seems very optimistic that we will return to Indiana with a child who will no longer need a feeding tube to eat, drink, or get the calories she needs.
The simple thought of it truly brings tears to my eyes thinking that this could actually work....but also in the back of my mind I have to realize it may not work. Mr. Zimmerman sees great potential in Mya as do Matt and I! We all see a kid that due to medical complications has become tube dependent. Mya is only 17 months old and this is all she knows. We are hoping to change her mind set about eating and make it an enjoyable experience.
I have done so much research and talked with so many other mothers over the last 17 months of Mya's life and everything has led me back to this clinic. I started chatting with him over emails and each month I would go back to him. I honestly believe we are doing the right thing for Mya to make this transition as easy as possible. (Which is not going to be easy by any means) We are basically going to undue everything that has happened over the last 17 months so it is going to take time.
We will spend 4-6 weeks give or take in Los Altos California. Matt, Mya, and I will go to his clinic everyday for 4 meals a day. Mya is going to be started back on purees so that we can make her meals high calorie and easier for her to tolerate. During the 4-6 weeks we are there Mya will be transitioned off the feeding tube and will remain on high calorie purees and milk. After she is stable and off the feeding tube for 2-3 months we will transition her off purees to regular foods.
Basically we are starting over.....just how you feed a baby purees and transition them onto regular table food. It is going to be a long process but I will have Mr. Zimmerman's support in California and every step of the way at home. I feel like this is the safest way for Mya to come off the tube. She can't afford to not have her calories or not gain weight. One of the best things about his clinic is that he works with only one intensive patient at a time. We are not going to be rushed out because the next child is in the waiting room. We basically have him all to ourselves! haha! Through out our time there we will be educated about how to prepare these recipes and about how to handle any set backs we may have.
We are very excited and hopeful!!!! This is probably coming as a complete shock to most of you because Matt and I have kept our decision so private. As you can see this is a HUGE step so it took a lot of consideration. But at the end of the day.....we have to try!!! Mya is the reason why we get up every morning and if we know someone that whole heartedly feels like they can help us we have to do it! So please say a prayer for Mya that she has the strength and the will to get through this. We leave on January 16th and start therapy on the 18th!!!
This could be one of the worst decisions we have ever made...but on the other hand it could truly be a miracle!!! And I really think we are going to come home with a miracle!!!
Thursday, December 31, 2009
Monday, December 7, 2009
Wednesday, December 2, 2009
Big Girl Bed
Mya is now napping and sleeping in her "Big Girl Bed!" It has been 3 nights in a row of great sleep! It is not actually a bed...but one of the chairs that you get at Toys R Us that pulls out into a little bed. Hey....she is comfy and not sleeping in a bouncy seat anymore so that's all that matters!!!
Matt also got all the crops out of the field last night! Thank heaven for great family and friends or we never would have gotten it done!!! At one point my Dad, Uncle, and Brother-In-Law were all helping! What more could you ask for! Thanks to everyone for their help!
Mya is still battling with a head cold! I think it's just going to linger around all winter the poor thing! We were having to space out her bottles a little more because she was getting sick but she has been doing better the last few days! Her appetite seems to be getting better again as well. She had an entire sausage link and mac 'n cheese for lunch so I was just thrilled!
We are planning to go and get the Christmas Tree tomorrow before Matt leaves on his bear hunting trip on Saturday! All this working and now he will be leaving for another week! He needs a break and relaxation with his guy friends so it will be good for him!
Matt also got all the crops out of the field last night! Thank heaven for great family and friends or we never would have gotten it done!!! At one point my Dad, Uncle, and Brother-In-Law were all helping! What more could you ask for! Thanks to everyone for their help!
Mya is still battling with a head cold! I think it's just going to linger around all winter the poor thing! We were having to space out her bottles a little more because she was getting sick but she has been doing better the last few days! Her appetite seems to be getting better again as well. She had an entire sausage link and mac 'n cheese for lunch so I was just thrilled!
We are planning to go and get the Christmas Tree tomorrow before Matt leaves on his bear hunting trip on Saturday! All this working and now he will be leaving for another week! He needs a break and relaxation with his guy friends so it will be good for him!
Sunday, November 22, 2009
It has been so long since I have updated my blog!!! The guys are still in the fields so things have been pretty crazy around here! I am looking forward to Thanksgiving in a few short days and spending time with the family!
We are all doing pretty good around here. Mya has such a cute personality it's hilarious! She is saying all kinds of words and absolutely loves to be outside! We have been out enjoying the warmer weather while it lasts!
For the first time in months (it was actually on my Birthday) Mya drank over 10oz. of thickened milk from her straw cup! Yes......you heard me right!! 10 oz!!!! It was by far the best Birthday gift I have ever received. Not to my surprise though she has not drank that much milk since. She has typically been drinking about 2-4 oz. a day which is still great! She is completely off the formula and totally on pediasure through her g-tube.
I have so many mixed emotions about Mya. I know that she can drink and eat....but it's such a struggle to get her off this darn tube. I mean can you really just not give the kid any tube feedings and force her to eat?? She is obviously not growing at a rapid rate so we are still taking a casual approach and kind of letting her wean herself off the tube. If she drinks we just take that amount off the tube feeding we give next.
Their is a website that I have become very familiar with that has helped me a ton! It's basically a resource for parents to tell their story, share ideas, and talk about feeding tubes. So many of the things these women are saying I can relate to so well! I guess it makes me feel like I am not the only person on the planet by far that is dealing with feeding tube dependency. Because lets face it my child is dependent on her feeding tube. I carry the syringe in the room and she sits on my lap....leans back...and is ready to "get her milk." The other day I found myself explaining to her..."Now Mya if you would just drink the milk we won't have to give it through your tube. Think of how much easier that would be." Like a 16 month old is going to get it! haha!
She has officially had her tube over a year now and when I think back she has made so much progress!!! I couldn't be more proud of her for all that she has over come and I couldn't love her more if I tried! I guess this is just another stepping stone in our lives that we will get through. One way or another! All of this has been tough on our marriage, tough on our family, and most importantly tough on little Mya!! I think I have put on 20 pounds and cut off over 10 inches of my hair in the process! Too bad I couldn't give a few pounds to Mya! She has still not yet reached the 20 pound mark!
I greatly appreciate all the prayers through out our journey!! All this feeding tube stuff has basically become our normal and we are getting along just fine! We are headed to get more granulation tissue treatments from her surgeon on Tuesday. They are actually going to instruct us on it (like we have not seen it done like a dozen times!) and then we can start doing it here at home. The tissue is becoming quite painful and Mya actually says ouch sometimes when you have to attach the tube so it needs to be done. Thanks again!
Happy Thanksgiving Everyone!!!!
We are all doing pretty good around here. Mya has such a cute personality it's hilarious! She is saying all kinds of words and absolutely loves to be outside! We have been out enjoying the warmer weather while it lasts!
For the first time in months (it was actually on my Birthday) Mya drank over 10oz. of thickened milk from her straw cup! Yes......you heard me right!! 10 oz!!!! It was by far the best Birthday gift I have ever received. Not to my surprise though she has not drank that much milk since. She has typically been drinking about 2-4 oz. a day which is still great! She is completely off the formula and totally on pediasure through her g-tube.
I have so many mixed emotions about Mya. I know that she can drink and eat....but it's such a struggle to get her off this darn tube. I mean can you really just not give the kid any tube feedings and force her to eat?? She is obviously not growing at a rapid rate so we are still taking a casual approach and kind of letting her wean herself off the tube. If she drinks we just take that amount off the tube feeding we give next.
Their is a website that I have become very familiar with that has helped me a ton! It's basically a resource for parents to tell their story, share ideas, and talk about feeding tubes. So many of the things these women are saying I can relate to so well! I guess it makes me feel like I am not the only person on the planet by far that is dealing with feeding tube dependency. Because lets face it my child is dependent on her feeding tube. I carry the syringe in the room and she sits on my lap....leans back...and is ready to "get her milk." The other day I found myself explaining to her..."Now Mya if you would just drink the milk we won't have to give it through your tube. Think of how much easier that would be." Like a 16 month old is going to get it! haha!
She has officially had her tube over a year now and when I think back she has made so much progress!!! I couldn't be more proud of her for all that she has over come and I couldn't love her more if I tried! I guess this is just another stepping stone in our lives that we will get through. One way or another! All of this has been tough on our marriage, tough on our family, and most importantly tough on little Mya!! I think I have put on 20 pounds and cut off over 10 inches of my hair in the process! Too bad I couldn't give a few pounds to Mya! She has still not yet reached the 20 pound mark!
I greatly appreciate all the prayers through out our journey!! All this feeding tube stuff has basically become our normal and we are getting along just fine! We are headed to get more granulation tissue treatments from her surgeon on Tuesday. They are actually going to instruct us on it (like we have not seen it done like a dozen times!) and then we can start doing it here at home. The tissue is becoming quite painful and Mya actually says ouch sometimes when you have to attach the tube so it needs to be done. Thanks again!
Happy Thanksgiving Everyone!!!!
Friday, November 6, 2009
Cincinnati Appointments
We had a good trip up to Cincinnati this week. Mya would only take 3 drinks during her swallow study...but did pass with thin liquids during those 3 drinks! We are to cautiously start cutting back on the thickener in her milk and juices. We can still offer her thin liquids in an open cup since I can kind of control the amount she is getting.
Since she had gone several hours without food or a drink she ate really well for the therapist! They were really impressed with how well she is doing with solid foods! We are also going to cut back on the number of ounces of milk she gets a day to make her more hungry to eat solid foods. We are going to strictly give her pedisure for her milk since it has 10 more calories per ounce compared to whole milk.
Previously she was getting 28 to 30 ounces of milk/pedisure per day and now she is going to get 22 ounces of pedisure. So far it seems to be helping with the hunger factor! We are also down to 4 feeding per day!!
We also did an MRI of Mya's brain while we were there. She had to be put to sleep again but did well with the recovery. The tests results came back normal but they do want to repeat the test in 6-12 months to make sure everything is developing appropriately. Overall we had a great trip! She also got her granulation tissue treated and got a new button put in while we were there!
Thanks for all your prayers and I hope everyone has a great weekend!
Since she had gone several hours without food or a drink she ate really well for the therapist! They were really impressed with how well she is doing with solid foods! We are also going to cut back on the number of ounces of milk she gets a day to make her more hungry to eat solid foods. We are going to strictly give her pedisure for her milk since it has 10 more calories per ounce compared to whole milk.
Previously she was getting 28 to 30 ounces of milk/pedisure per day and now she is going to get 22 ounces of pedisure. So far it seems to be helping with the hunger factor! We are also down to 4 feeding per day!!
We also did an MRI of Mya's brain while we were there. She had to be put to sleep again but did well with the recovery. The tests results came back normal but they do want to repeat the test in 6-12 months to make sure everything is developing appropriately. Overall we had a great trip! She also got her granulation tissue treated and got a new button put in while we were there!
Thanks for all your prayers and I hope everyone has a great weekend!
Friday, October 30, 2009
Appointment
Well....Mya's weight was only 19 lbs. 8 oz. So that means she only gained a half a pound in 3 months. She dropped pretty significantly on the growth chart for her weight. Dr. Woods was glad we are headed to Cincinnati next week to see what they have to say. She didn't seem to discouraged at this point since we have just recently got her 100% off the formula.
Dr. Woods said that it is not affecting her development mentally or physically at this point. So hopefully Cincin has some good advise and the pediasure will help her start to gain some more weight!
We both received our seasonal and H1N1 shots last week so hopefully we will keep all this sickness out of the house!
Dr. Woods said that it is not affecting her development mentally or physically at this point. So hopefully Cincin has some good advise and the pediasure will help her start to gain some more weight!
We both received our seasonal and H1N1 shots last week so hopefully we will keep all this sickness out of the house!
Tuesday, October 27, 2009
No More Formula!
Mya is officially off formula now!!! YAY!! She is doing really well with it! She is taking 3 ounces of whole milk and 3 ounces of pediasure now. We are doing this mixture 5 times per day which is great because that means no more night feedings unless she wakes up and is hungry!
The home care company is also coming tomorrow to pick up the pump we used since we are doing all boluses now! We have not been using it for over a month so I feel okay with sending it back! We are slowly but surely making progress! The occupational therapist was here yesterday and she was amazed at Mya. She was pointing out the window saying pumpkin and showing her our "doggies." Penny has seen so many changes in her over the last year it's incredible. Mya can now touch her own tongue and not gag so badly that it makes her throw up....she can sip milk up a straw.....and most importantly she can eat! We will leave this coming Monday night for her swallow test on Tuesday morning so I pray that she passes!!! We have been prepping her for it so I really feel like she is safe to swallow thin liquids now.
If she passes then we need a plan to get Mya off these tube feedings. She can drink and can eat...just not enough to stay hydrated and grow! I already feel my stomach turning hoping that she passes this test. It is not an invasive test what so ever. Basically she will be sitting in a special chair with a camera next to her face. They put barium in the liquids and she drinks. As she drinks the camera video tapes and follows the milk down her throat. Either it goes in her stomach or it goes into her lungs!
In the past we have struggled with getting Mya to drink anything during the test. It is in a different environment with doctors and nurses surrounding her. Plus she is not a big drinker anyways!!! I really feel like God is going to take care of her! Things are headed in the right direction for us!! Just one more test!!!!
We go for her 15 month appointment on Thursday so I will send a quick update on her weight. I was hoping she would weigh 20 pounds but I just don't think we are quite there! Thanks again for all your continued prayers!
The home care company is also coming tomorrow to pick up the pump we used since we are doing all boluses now! We have not been using it for over a month so I feel okay with sending it back! We are slowly but surely making progress! The occupational therapist was here yesterday and she was amazed at Mya. She was pointing out the window saying pumpkin and showing her our "doggies." Penny has seen so many changes in her over the last year it's incredible. Mya can now touch her own tongue and not gag so badly that it makes her throw up....she can sip milk up a straw.....and most importantly she can eat! We will leave this coming Monday night for her swallow test on Tuesday morning so I pray that she passes!!! We have been prepping her for it so I really feel like she is safe to swallow thin liquids now.
If she passes then we need a plan to get Mya off these tube feedings. She can drink and can eat...just not enough to stay hydrated and grow! I already feel my stomach turning hoping that she passes this test. It is not an invasive test what so ever. Basically she will be sitting in a special chair with a camera next to her face. They put barium in the liquids and she drinks. As she drinks the camera video tapes and follows the milk down her throat. Either it goes in her stomach or it goes into her lungs!
In the past we have struggled with getting Mya to drink anything during the test. It is in a different environment with doctors and nurses surrounding her. Plus she is not a big drinker anyways!!! I really feel like God is going to take care of her! Things are headed in the right direction for us!! Just one more test!!!!
We go for her 15 month appointment on Thursday so I will send a quick update on her weight. I was hoping she would weigh 20 pounds but I just don't think we are quite there! Thanks again for all your continued prayers!
Wednesday, October 21, 2009
Update
Well....so far so good with switching Mya off formula. We are half way there! I'm going to wait a few more days and then up the pediasure/whole milk amount! Things have been pretty uneventful around here! Matt has been working many late nights! So Mya and I have had a lot of bonding time!
Mya now knows where her mouth, teeth, tongue, nose, ears, eyes, hair, hands, and feet are!!! She is a smart little cookie!!!! We go next week for her 15 month check up so I will be sure to update everyone on her weight! We have not had a doctors appointment related to her feeding problems for almost 4 weeks now!!! That is the longest we have ever been without an appointment for months!!
Mya now knows where her mouth, teeth, tongue, nose, ears, eyes, hair, hands, and feet are!!! She is a smart little cookie!!!! We go next week for her 15 month check up so I will be sure to update everyone on her weight! We have not had a doctors appointment related to her feeding problems for almost 4 weeks now!!! That is the longest we have ever been without an appointment for months!!
Monday, October 12, 2009
Mya is finally getting a few more teeth in her mouth! She has 2 more teeth that have popped through and a few more on the way! We have all been struggling with colds around here. Nothing serious but these runny noses are getting old!
Mya is now up to 5 1/2 to 6 ounces on her feedings! Can you believe it! The goal was to get her up to 6 oz. so we are almost there! We are actually going to start the transition off the formula as well. Right now I am mixing pediasure with whole milk. We will give her an ounce of that mixture and the rest formula. We are going to slowly make that transition since her body doesn't typically respond well to change. Eventually she will get her feedings with half whole milk and half pediasure. So she calorie per ounce will still be about 24 to 25 calories her ounce.
She can basically eat any type of food now....just small bites and tiny amounts! She is still drinking thickened liquids from her cup but still just sips with meals. The other day she drank 3 oz. before noon and that was the most she had drank for months!!!
Mya has a huge vocabulary and is in the stage of trying to repeat everything you say!! Tractor, Minnie, and Elmo are a few new words she is saying! We have been staying busy despite all the rain we have been getting! Here are a few updated picture to enjoy!!
Mya is now up to 5 1/2 to 6 ounces on her feedings! Can you believe it! The goal was to get her up to 6 oz. so we are almost there! We are actually going to start the transition off the formula as well. Right now I am mixing pediasure with whole milk. We will give her an ounce of that mixture and the rest formula. We are going to slowly make that transition since her body doesn't typically respond well to change. Eventually she will get her feedings with half whole milk and half pediasure. So she calorie per ounce will still be about 24 to 25 calories her ounce.
She can basically eat any type of food now....just small bites and tiny amounts! She is still drinking thickened liquids from her cup but still just sips with meals. The other day she drank 3 oz. before noon and that was the most she had drank for months!!!
Mya has a huge vocabulary and is in the stage of trying to repeat everything you say!! Tractor, Minnie, and Elmo are a few new words she is saying! We have been staying busy despite all the rain we have been getting! Here are a few updated picture to enjoy!!
Monday, September 28, 2009
Update
We met with Mya's therapist today and got some encouraging words. Basically we have to start working with Mya to drink and swallow thin liquids. (We have always thickened her milk so she was not aspirating it into her lungs) We are to start giving her chunks of popsicle on a spoon and small sips of unthickened milk with an open cup. She has her swallow test on November 3rd so we have to get her ready to hopefully pass it!!
Her therapist was impressed with how well she did despite the head cold she has. She stated that physically and mentally Mya is right on target for her age! Which is so great to hear!!
We are basically not using the feeding pump at all any more. She was not tolerating the night time feeding so we basically are giving her 2 oz. before bed and waiting until she wakes up to give her the other 2 oz. So far it was been about 5 nights and she is sleeping much better. She was very fussy, gaging, and sometimes still vomiting so we decided to make a little change to our routine!
We have also been able to increase her bolus feeding to 4 1/2 to sometimes 5 oz. during the day! Despite all of this she is still very tiny.....only weighing 19lbs. 5 oz! She actually turned 14 months today....so that's only 5 oz. gained in 2 months. Ugh!!
We are going to keep chugging along and work on swallowing thin liquids so that we will hopefully get some good results in November!
Her therapist was impressed with how well she did despite the head cold she has. She stated that physically and mentally Mya is right on target for her age! Which is so great to hear!!
We are basically not using the feeding pump at all any more. She was not tolerating the night time feeding so we basically are giving her 2 oz. before bed and waiting until she wakes up to give her the other 2 oz. So far it was been about 5 nights and she is sleeping much better. She was very fussy, gaging, and sometimes still vomiting so we decided to make a little change to our routine!
We have also been able to increase her bolus feeding to 4 1/2 to sometimes 5 oz. during the day! Despite all of this she is still very tiny.....only weighing 19lbs. 5 oz! She actually turned 14 months today....so that's only 5 oz. gained in 2 months. Ugh!!
We are going to keep chugging along and work on swallowing thin liquids so that we will hopefully get some good results in November!
Monday, September 21, 2009
Nothing new!
I guess you could say we are on cruise control! Not a whole lot new in the Holderly house! I had my first 12 hour shift last week! It was great getting back in the "work mode." We had a delivery so that made the 12 hour shift go pretty quickly! The baby was about the same size that Mya was when she was born! It was hard to picture her that little again!!
We have been keeping pretty busy! We had our last swim of the summer, the Reynolds Festival, a Purdue Football game, and several other exciting things since I blogged last! Mya is saying all kinds of words now! I think yellow is going to be her favorite color! She tends to think everything is the color yellow!! She just cracks me up!!! Hope everyone has a great week!
We have been keeping pretty busy! We had our last swim of the summer, the Reynolds Festival, a Purdue Football game, and several other exciting things since I blogged last! Mya is saying all kinds of words now! I think yellow is going to be her favorite color! She tends to think everything is the color yellow!! She just cracks me up!!! Hope everyone has a great week!
Friday, September 11, 2009
More News!
I am actually going to start working PRN at the hospital again starting next Tuesday! I feel like Mya is doing better and I feel comfortable leaving her with someone Matt and I both trust! My mom and mother-in-law are going to help us out! We are hoping to find an outside person as well that feels comfortable dealing with a feeding tube so even both grandma's get a break!
I think it will be good for me to have some "adult time" and also reassure Mya that she can be very well taken care of by someone other than her Mommy! I am only planning to work 1 or 2 days a week, but I think it will make a huge difference for me! I'm excited to start back in OB and help deliver babies again! I have been out of OB for some time now....so I have a lot of catching up to do! But I am ready for the challenge!
Mya's appointments are slowing down and we won't go back to Cincinnati until November 3rd. They are going to do another swallow study to see if Mya can pass the test while drinking thin liquids. But that should be the only tests she has to have now!! Thank goodness!
The poor kid has had 2 upper GI's, 2 stomach emptying scans, an EEG, overnight pH probe testing, a triple scope, urine testing, blood work, skin allergy testing, and 3 swallow studies! I think that's enough!! Not to mention the numerous times she has had the granulation treatments done!
I have been doing a ton of research in the past few weeks and chatted with several other parents. I think until Mya gets her feeding tube out we are just going to have ups and downs with the vomiting. It seems as though tube fed children either tolerate feedings really well or really poorly. And unfortunately Mya is one of the unfortunate ones. She is doing much better but still has her days! After chatting with Cincinnati we are hoping after another 6 months or so we can start cutting back on her tube feedings and get her hungry and thirsty enough to get her eating and drinking more. She is a little too young at this point to start cutting back her milk intake.
Matt and I have been so grateful for all the support we have received over the past 13 months! Everywhere we go someone is always asking how Mya is doing! It means a lot to know that everyone if pulling for her! She really acts like a typical kid her age minus the way she gets her nutrition!
We are going to Matt's 10 year class reunion this weekend so I am looking forward to that and Reynolds is also having their big festival! It should be a fun filled weekend!!
I think it will be good for me to have some "adult time" and also reassure Mya that she can be very well taken care of by someone other than her Mommy! I am only planning to work 1 or 2 days a week, but I think it will make a huge difference for me! I'm excited to start back in OB and help deliver babies again! I have been out of OB for some time now....so I have a lot of catching up to do! But I am ready for the challenge!
Mya's appointments are slowing down and we won't go back to Cincinnati until November 3rd. They are going to do another swallow study to see if Mya can pass the test while drinking thin liquids. But that should be the only tests she has to have now!! Thank goodness!
The poor kid has had 2 upper GI's, 2 stomach emptying scans, an EEG, overnight pH probe testing, a triple scope, urine testing, blood work, skin allergy testing, and 3 swallow studies! I think that's enough!! Not to mention the numerous times she has had the granulation treatments done!
I have been doing a ton of research in the past few weeks and chatted with several other parents. I think until Mya gets her feeding tube out we are just going to have ups and downs with the vomiting. It seems as though tube fed children either tolerate feedings really well or really poorly. And unfortunately Mya is one of the unfortunate ones. She is doing much better but still has her days! After chatting with Cincinnati we are hoping after another 6 months or so we can start cutting back on her tube feedings and get her hungry and thirsty enough to get her eating and drinking more. She is a little too young at this point to start cutting back her milk intake.
Matt and I have been so grateful for all the support we have received over the past 13 months! Everywhere we go someone is always asking how Mya is doing! It means a lot to know that everyone if pulling for her! She really acts like a typical kid her age minus the way she gets her nutrition!
We are going to Matt's 10 year class reunion this weekend so I am looking forward to that and Reynolds is also having their big festival! It should be a fun filled weekend!!
Wednesday, September 9, 2009
Mya and her feeding therapist Colleen!!Tuesday, September 8, 2009
Getting back in the swing of things!
We had a great time in Florida and a fun Labor Day weekend! The months are just flying by! Before we know it all the guys are going to be getting in the field! Mya had a couple days of bad vomiting but overall is doing well. We are trying to get back into our regular routine!
We are still doing the bolus feedings through the syringe. We have actually increased her feedings to 41/2 ounces instead of 4. She is taking larger bites of food which is also an improvement! They still seem very small but we are on an upward trend at least!
She is walking all over the place and is into everything!! We have been attempting putting her to sleep in the crib but so far we have not had much luck!
We are still doing the bolus feedings through the syringe. We have actually increased her feedings to 41/2 ounces instead of 4. She is taking larger bites of food which is also an improvement! They still seem very small but we are on an upward trend at least!
She is walking all over the place and is into everything!! We have been attempting putting her to sleep in the crib but so far we have not had much luck!
Tuesday, August 25, 2009
No more physical therapy!
Mya had her last physical therapy session today! She walked right through the doors!!! Vicki has been so great to work with over the last 7 months! Mya is physically doing everything age appropriate at this point so we don't see a need to continue physical therapy at this point! Vicki is always a phone call away if I have any questions so I feel relief in that! What a great accomplishment for Mya today!!
Things are also going extremely well with the new feeding plan! We are giving her 2 ounces of formula within about 10 minutes through a syringe and then waiting 50-60 minutes and giving her the other 2 ounces within about 10 minutes! It is working out wonderfully! She is not hooked up to a feeding tube for an hour at a time during the day anymore!!! (We are still using the pump for her midnight feeding) We then are waiting the 2 hours and then start the process over!
What a change it has made for me and Mya during our day! I don't feel like I spend half my day chasing a one year old around with a tube attached to her!!! I can't even express to you how happy Matt and I are about the change! Her GI doctor in Cincinnati is awesome and was so encouraging! He said we made his day last week when we were there! We are very gradually going to increase the first part of the tube feeding to hopefully one day get the entire feeding done within about 20 minutes. After about another month we are going to switch her to either whole milk or pediasure depending on how she is doing. The GI doctor wants to make sure she tolerates the bolus feedings really well before we switch up the milk on her.
Wow!!! I feel like I am almost living a normal life again! We still have our work cut out for us as far as Mya drinking. She still only wants a few sips a day but I feel with time she will drink!
We are heading to Florida this Sunday for a few days with my sister Becky, her husband Tim, their two children Emma & Timmy, and my parents! It should be a fun and relaxing time! We need a little family time before Matt gets in the field for harvest! Hope everyone has a great rest of the week!
Things are also going extremely well with the new feeding plan! We are giving her 2 ounces of formula within about 10 minutes through a syringe and then waiting 50-60 minutes and giving her the other 2 ounces within about 10 minutes! It is working out wonderfully! She is not hooked up to a feeding tube for an hour at a time during the day anymore!!! (We are still using the pump for her midnight feeding) We then are waiting the 2 hours and then start the process over!
What a change it has made for me and Mya during our day! I don't feel like I spend half my day chasing a one year old around with a tube attached to her!!! I can't even express to you how happy Matt and I are about the change! Her GI doctor in Cincinnati is awesome and was so encouraging! He said we made his day last week when we were there! We are very gradually going to increase the first part of the tube feeding to hopefully one day get the entire feeding done within about 20 minutes. After about another month we are going to switch her to either whole milk or pediasure depending on how she is doing. The GI doctor wants to make sure she tolerates the bolus feedings really well before we switch up the milk on her.
Wow!!! I feel like I am almost living a normal life again! We still have our work cut out for us as far as Mya drinking. She still only wants a few sips a day but I feel with time she will drink!
We are heading to Florida this Sunday for a few days with my sister Becky, her husband Tim, their two children Emma & Timmy, and my parents! It should be a fun and relaxing time! We need a little family time before Matt gets in the field for harvest! Hope everyone has a great rest of the week!
Saturday, August 22, 2009
Negative!
Mya's tests from Cincinnati came back negative! She is not allergic to soy, milk, wheat, eggs, or peanuts! Which is great!!! Her emptying scan came back normal also! I think our child is going to remain a mystery and she is just going to slowly but surely get better on her own!!
Sorry it took a couple extra days for me to blog....the day before we left for Cinci my grandmother passed away. We made it home on Thursday just in time for her viewing to start! It has been a crazy few days but she is now resting peacefully in heaven!
We trying a new feeding plan with Mya which knock on wood is going well since we have been home! We have had only one vomiting episode!! I feel like things really are looking up!! Mya now has four teeth and is walking all over the place (sometimes with quite a few falls but she keeps on truckin)!!!
My goal for her was to have her walk into her next physical therapy appointment and we go in a few days! So yay...she accomplished her goal! Thanks again for all the thoughts and prayers!
I will update later this week about how her new feeding plan is going!
Sorry it took a couple extra days for me to blog....the day before we left for Cinci my grandmother passed away. We made it home on Thursday just in time for her viewing to start! It has been a crazy few days but she is now resting peacefully in heaven!
We trying a new feeding plan with Mya which knock on wood is going well since we have been home! We have had only one vomiting episode!! I feel like things really are looking up!! Mya now has four teeth and is walking all over the place (sometimes with quite a few falls but she keeps on truckin)!!!
My goal for her was to have her walk into her next physical therapy appointment and we go in a few days! So yay...she accomplished her goal! Thanks again for all the thoughts and prayers!
I will update later this week about how her new feeding plan is going!
Monday, August 17, 2009
Lake Trip!
We had a great time this week with the Robert's family at Lake Cumberland! We were in desperate need of some relaxation! We leave tomorrow evening for Cincinnati and will be home on Thursday late afternoon. They are doing a stomach emptying scan and allergy tests on Wednesday and we meet with all the doctors on Thursday morning. Wish us luck!!!! We will finally find out if she has food allergies! They will also be deciding what kind of milk to start her on during these appointments!
Mya's G-tube came out for the first time in the middle of the night this past evening! I was so tired Matt kept trying to wake me up! He just kept saying.....Amanda, Mya's tube came out....Mya's tube came out!!! We actually did pretty well and were able to get the spare in without problems! I was pretty proud of the two of us! We were told over and over to call the hospital if this happened to notify the surgeon so after being on hold for almost an hour we finally got the okay to go ahead and feed her like we normally would and to just keep an extra eye on her belly and G-tube site!
Mya's G-tube came out for the first time in the middle of the night this past evening! I was so tired Matt kept trying to wake me up! He just kept saying.....Amanda, Mya's tube came out....Mya's tube came out!!! We actually did pretty well and were able to get the spare in without problems! I was pretty proud of the two of us! We were told over and over to call the hospital if this happened to notify the surgeon so after being on hold for almost an hour we finally got the okay to go ahead and feed her like we normally would and to just keep an extra eye on her belly and G-tube site!
Wednesday, August 12, 2009
Nothing much has changed around here!! Which is always a good thing!! Mya finally has another bottom tooth and a top tooth that has broke through! Thank goodness! I thought she was only going to have one tooth forever! haha!
I would say she is offically walking now! She still crawls some...but is definately walking more than crawling now! She is into everything which Daddy just gets a bang out of!!! She is also saying a ton of words or at least her version of words! Ball, book, balloon, meow, bye-bye, hi, mama, dada, papa, baa, and we have even taught her what a tractor says!!
We have had a few more vomiting episodes within the last few days with the formula which has been discouraging but it's nothing like what it used to be! Thank goodness! We leave next Tuesday night for Cincinnati and will come back late afternoon on Thursday. We will finally find out if she has food allergies for sure and they are repeating her stomach emptying scan. We also meet the doctors to review all her tests results and hopefully get her granulation tissue taken care of. They are also going to decide what kind of milk to start her on based on the allergy tests. (She is still on a non-milk based hypoallergenic formula)
But for this weekend we are heading to Lake Cumberland with some friends to enjoy some relaxation time!! Much needed for the entire family! I'm excited to get away for a few days!
I would say she is offically walking now! She still crawls some...but is definately walking more than crawling now! She is into everything which Daddy just gets a bang out of!!! She is also saying a ton of words or at least her version of words! Ball, book, balloon, meow, bye-bye, hi, mama, dada, papa, baa, and we have even taught her what a tractor says!!
We have had a few more vomiting episodes within the last few days with the formula which has been discouraging but it's nothing like what it used to be! Thank goodness! We leave next Tuesday night for Cincinnati and will come back late afternoon on Thursday. We will finally find out if she has food allergies for sure and they are repeating her stomach emptying scan. We also meet the doctors to review all her tests results and hopefully get her granulation tissue taken care of. They are also going to decide what kind of milk to start her on based on the allergy tests. (She is still on a non-milk based hypoallergenic formula)
But for this weekend we are heading to Lake Cumberland with some friends to enjoy some relaxation time!! Much needed for the entire family! I'm excited to get away for a few days!
Wednesday, August 5, 2009
19 POUNDS!!!
WOOHOO!!! She finally made it to 19 pounds!!! Mya had her 12 month appointment today and it went pretty well! She is a healthy, but tiny one year old!
Sometimes when I think about the day she was born it just brings tears to my eyes! For those of you that know the story I'm sure it gives you a good laugh! My husband had several cement trucks coming to the house that day and he had a hard time believing me that I was really in labor 3 weeks before my due date! But being an OB nurse you would have thought he would take my word for it! haha!
We have been cutting back on some of the therapy appointments in Indianapolis. Every week making at least one trip to Indy was wearing me and Mya out! We are starting to go just once per month and have Penny come to our home every 2 weeks! Her physical therapy is also just once per month now! I feel like I have some of my life back! Colleen in Indy is definitely worth the trip and we have sooo much gratitude for all her help. She has really been the driving force for me to get Mya where she is today! She is just a phone call away and seeing her once per month will give us enough time in between appointments to work on the skills we learn!
Mya had a great 1st Birthday party on Sunday! All her little friends were there to help her celebrate as well! We have such a great group of friends and wonderful family members that have been there for us! Hope everyone has a great rest of the week!
Sometimes when I think about the day she was born it just brings tears to my eyes! For those of you that know the story I'm sure it gives you a good laugh! My husband had several cement trucks coming to the house that day and he had a hard time believing me that I was really in labor 3 weeks before my due date! But being an OB nurse you would have thought he would take my word for it! haha!
We have been cutting back on some of the therapy appointments in Indianapolis. Every week making at least one trip to Indy was wearing me and Mya out! We are starting to go just once per month and have Penny come to our home every 2 weeks! Her physical therapy is also just once per month now! I feel like I have some of my life back! Colleen in Indy is definitely worth the trip and we have sooo much gratitude for all her help. She has really been the driving force for me to get Mya where she is today! She is just a phone call away and seeing her once per month will give us enough time in between appointments to work on the skills we learn!
Mya had a great 1st Birthday party on Sunday! All her little friends were there to help her celebrate as well! We have such a great group of friends and wonderful family members that have been there for us! Hope everyone has a great rest of the week!
Tuesday, August 4, 2009
Saturday, August 1, 2009
Nothing but good things to say!
Mya has added a ton of new foods to her diet! We are gradually trying new things. Peas, pears, lunch meat, ravioli, kidney beans, gold fish crackers, macaroni and cheese, toast, and the list goes on! She is doing a great job with eating! She doesn't eat the quantity that a child her age should.....but we are working on it!!
She finger feeds herself, but will also now let me feed her with a fork! She never used to let us feed her with utensils so that is a great improvement.
She has had a couple of vomiting episodes while eating but we are quickly learning what foods she tolerated and what foods she doesn't! I couldn't be more proud of her!!!!
Over the last 2 months Mya has drank about an ounce of milk from her cup 4 different times now! She is very hot and cold with drinking. Some days she will not drink anything and others she will take a few sips with each meal. I have confidence that she WILL drink her entire amount one day!
I feel like things are finally looking up! I know we will have good days and bad days...but for once I feel like the good days are out numbering the bad! We go for her 12 month doctor's appointment this week so hopefully we get some good news on her weight. We went for a weight check about 2 weeks ago and she was still 18lbs. 9oz. (Which was the exact same as when she was 9 months old)
She is not walking yet.....but takes several steps at a time. She has learned how to maneuver through the house walking along the walls, couches, chairs, etc. Life would be so much easier if she would just walk! haha! She is doing really well considering all the trauma she has been through.
We are having her Birthday party tomorrow here in the shop so I will post some pictures afterward! I think we went a little over board....but honestly Matt and I want to celebrate her progress and just be happy for all the love and support all our friends and family have given us!!! Although the last year has been tough we are stronger for it and we couldn't have gotten through it without all our family and friends!!!!
She finger feeds herself, but will also now let me feed her with a fork! She never used to let us feed her with utensils so that is a great improvement.
She has had a couple of vomiting episodes while eating but we are quickly learning what foods she tolerated and what foods she doesn't! I couldn't be more proud of her!!!!
Over the last 2 months Mya has drank about an ounce of milk from her cup 4 different times now! She is very hot and cold with drinking. Some days she will not drink anything and others she will take a few sips with each meal. I have confidence that she WILL drink her entire amount one day!
I feel like things are finally looking up! I know we will have good days and bad days...but for once I feel like the good days are out numbering the bad! We go for her 12 month doctor's appointment this week so hopefully we get some good news on her weight. We went for a weight check about 2 weeks ago and she was still 18lbs. 9oz. (Which was the exact same as when she was 9 months old)
She is not walking yet.....but takes several steps at a time. She has learned how to maneuver through the house walking along the walls, couches, chairs, etc. Life would be so much easier if she would just walk! haha! She is doing really well considering all the trauma she has been through.
We are having her Birthday party tomorrow here in the shop so I will post some pictures afterward! I think we went a little over board....but honestly Matt and I want to celebrate her progress and just be happy for all the love and support all our friends and family have given us!!! Although the last year has been tough we are stronger for it and we couldn't have gotten through it without all our family and friends!!!!
Wednesday, July 29, 2009
Tuesday, July 28, 2009
Happy Birthday Mya!
Today is Mya's first Birthday!!! The last year has flown by!!! I can't even believe my little baby is now 1!!!! The past week has been great for us! She has been eating really well!!! She even had a couple bites of a McDonald's cheeseburger and french fries!!! Can you believe it!!! Mya is also getting so close to walking it's not even funny! She took 7 steps on Sunday! All the doctors thought she would not even be crawling by a year!
We have a long road ahead of us especially when it comes to drinking but I am starting to hopefully see some light at the end of the tunnel!!! God works in mysterious ways I guess! But he did bless us with the most beautiful 1 year old little girl I know!!!!
Happy Birthday Mya!!!
We have a long road ahead of us especially when it comes to drinking but I am starting to hopefully see some light at the end of the tunnel!!! God works in mysterious ways I guess! But he did bless us with the most beautiful 1 year old little girl I know!!!!
Happy Birthday Mya!!!
Wednesday, July 22, 2009
Negative!
Mya's biopsies came back NEGATIVE! YAY! So, that kind of rules out a lot of different diseases! Her over night study did show quite a bit of reflux as to be expected. The GI doctor at this point wants to repeat her emptying scan at Cincinnati and see what that says. He wants to get the allergy testing done and possibly start her on a pureed diet through her feeding tube.
The nurse is to call me back this afternoon to let us know when they can do the emptying scan. Hopefully they can do it when we return on August 19th and 20th so we only have to make one trip!
The nurse is to call me back this afternoon to let us know when they can do the emptying scan. Hopefully they can do it when we return on August 19th and 20th so we only have to make one trip!
Sunday, July 19, 2009
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