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!
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