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!
Monday, September 28, 2009
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!
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