Mya is still doing well here at the clinic! She is now 21 pounds 5 ounces with a dry diaper on! Wow!!! I never thought we would see the 20 pound mark let alone 21 pounds! Her legs have the chubby look back to them and she really looks nice and healthy! She is soon going to be 19 months old so she is still very small for her age but we are seeing a ton of progress and the weight and height will catch up eventually.
We are still hoping to start training next week but we will of course have to see how the rest of the week goes. We are ready to get home but know that this is where we need to be. Mya was 3 weeks yesterday without use of her feeding tube! How great is that! I honestly don't see any turning back at this point! I'm sure next week is going to be rough with us feeding her but hopefully we will all adjust within a few days.
Thank you to all our supporters out there!! I'm sure there are people praying for Mya that have never even met her! She is a great kid and we couldn't love her anymore! Matt and I have a great set of parents that we couldn't have gotten through all this without! I can't even count the number of appointments my Mom has went to with me when Matt had to work. You guys has always been there to support us no matter what! I guess sometimes we just don't say it enough...THANK YOU!!!!
Wednesday, February 24, 2010
Sunday, February 21, 2010
More pictures from the visit with Grandma & Grandpa
Cheese! 
Drinking milk with Grandpa!
Loving that California weather! 
China Town!
China Town!
Coit Tower
My Mom and I in front of Lombard Street!
Grace Cathedral- Totally Amazing!
One of the many hills in the city!
San Fransisco Trolley!
My parents inside Grace Cathedral
We were able to tour one floor of this famous Victorian home on our tour. It is one of the famous"Seven Sister" Victorian homes. The lawn in the opening of the show Full House was shot right in
front of the "Seven Sister" homes.
Not a great picture...but this is Alcatraz
Starting up on week 6
We are starting week 6 of therapy tomorrow! I can't believe we have already been here this long! All things considered it has went relatively fast. The weather was really nice for the last couple weeks but it is suppose to be raining on and off this week.
Mya is doing well! It has almost been three weeks without using the g-tube at all! We had some problems with constipation and what we call "beached whale syndrome" since the last time I blogged. This kid was so over loaded with food she would come out of sessions and just plop on the ground and literally acted like a beached whale! It only lasted a few days and she is back to her crazy...bubbly self! As for the constipation we are giving her a small dose of miralax to help her out a bit. The food she eats has a lot of rice cereal...milk...cheese...chicken which can cause a bit of a problem. It's very common especially when these kind of kids are not used to the volumes of food she is getting now!
The vomiting is getting much more manageable. She rarely vomits with the food at this point. When she has milk she more or less has wet burps. We pretty much bi-passed the whole bottle/burping phase with Mya so she is basically having to learn to burp as if she were an infant. So at least 2-3 times a day we seem to have a little spit up. Occasionally when the burp and spit up come Mya just wants to keep throwing up and revert back to old habits. We are seeing less and less of this happening but it will take time to completely stop.
Overall we are completely happy with her progress she has made here. She loves to drink which is totally crazy since we came here with a kid that would only drink 1-2 ounces in a 24 hour period! But the down fall is Mya has been waking up at all hours of the night wanting her milk!! Last night we woke up to her crying out by the fridge saying..."Milk...Milk." Who would have thought that our little girl would be asking...almost begging for a drink! How crazy! She also goes up to all her stuffed animals and toys and gives them a drink as well! At least she is willing to share I guess!
The plan for now is to get everything set in stone with one more week of therapy with Ben. Then we will have a week of training. Followed by 1-2 weeks on our own at the hotel before we head back home. So...we hope to be home mid-March!
California is nice....but not our home that's for sure! We are ready to get back to everyday living! See our family and our friends!!! I am excited to tackle this head on when we get home and get things back to normal! We will be in contact with Ben probably everyday for the first few weeks and he will be there to support us and transition her back on table foods in a few months!
Hope everyone had a great weekend! We are also starting to work on teeth brushing this week so it should be interesting!
Mya is doing well! It has almost been three weeks without using the g-tube at all! We had some problems with constipation and what we call "beached whale syndrome" since the last time I blogged. This kid was so over loaded with food she would come out of sessions and just plop on the ground and literally acted like a beached whale! It only lasted a few days and she is back to her crazy...bubbly self! As for the constipation we are giving her a small dose of miralax to help her out a bit. The food she eats has a lot of rice cereal...milk...cheese...chicken which can cause a bit of a problem. It's very common especially when these kind of kids are not used to the volumes of food she is getting now!
The vomiting is getting much more manageable. She rarely vomits with the food at this point. When she has milk she more or less has wet burps. We pretty much bi-passed the whole bottle/burping phase with Mya so she is basically having to learn to burp as if she were an infant. So at least 2-3 times a day we seem to have a little spit up. Occasionally when the burp and spit up come Mya just wants to keep throwing up and revert back to old habits. We are seeing less and less of this happening but it will take time to completely stop.
Overall we are completely happy with her progress she has made here. She loves to drink which is totally crazy since we came here with a kid that would only drink 1-2 ounces in a 24 hour period! But the down fall is Mya has been waking up at all hours of the night wanting her milk!! Last night we woke up to her crying out by the fridge saying..."Milk...Milk." Who would have thought that our little girl would be asking...almost begging for a drink! How crazy! She also goes up to all her stuffed animals and toys and gives them a drink as well! At least she is willing to share I guess!
The plan for now is to get everything set in stone with one more week of therapy with Ben. Then we will have a week of training. Followed by 1-2 weeks on our own at the hotel before we head back home. So...we hope to be home mid-March!
California is nice....but not our home that's for sure! We are ready to get back to everyday living! See our family and our friends!!! I am excited to tackle this head on when we get home and get things back to normal! We will be in contact with Ben probably everyday for the first few weeks and he will be there to support us and transition her back on table foods in a few months!
Hope everyone had a great weekend! We are also starting to work on teeth brushing this week so it should be interesting!
Tuesday, February 16, 2010
Update on Mya
We took a little break from the blog while my parents were here for a few days! Overall Mya is doing great. She has been off the tube for 2 weeks as of today! The food volume is where it needs to be consistently now. We have tried adding back in milk the last 2 days and it is not going as well as we hope. We are going to wait a few more days and try again. If it doesn't work out we are just going to stick with the sippy cup and really monitor the intake.
She is doing a great job controlling the vomiting with the food but the milk is much harder for her. So basically we give her the 6-7 oz. of milk over an hour or so with the sippy cup. (It's by no means a perfect meal or situation but much better than the tube!) Over time she will get more and more used to these bigger volumes!
She is crying less and less with the meals and has had several with no crying at all. The meals are taking less than 20 minutes consistently so we are on track!
We had a great visit with my parents and it couldn't have come at a better time for us! We are a little over half way through! But I feel like we are definitely beyond a lot of the hard stuff. We are going to have some bad meals here and there when we get home and I'm sure a few vomits here and there. But overall this is going to be a success! We are NOT going back to that horrible feeding tube!
In just a few short weeks we have seen a total change in Mya. It's pretty amazing really! She still has her share of issues but of course we can't expect them to all be gone with a snap of a finger! But for now we have a growing....healthly...happy....eating....drinking....tube free child!!!! What more could we ask for!!
We have several months at home where we are going to have to stick to the protocol to a T. I will have to be home at meal time no matter what the circumstance. I guess I don't have a "typical" 8-5 job.....but my job is going to be keeping Mya eating and drinking and off her tube for several months. After 2-3 months with the help of Ben we will progressively transition her off purees to "regular" foods.
I know this all must seem a bit crazy. Mainly because she looks like any other kid you would see but she has developed a feeding disorder. Matt and I are both dedicated to getting her well! I am so unbelievably grateful for Ben and his services. Without his help I honestly think Mya would have been tube fed for several more years. It honestly scares me to think what kind of mess we would be in then!
I hope one day we look back at this and it is a small thing. But for the last year and a half it has been very real to us. We have went to doctor after doctor...therapist after therapist. We have done test after test. It has consumed our lives because this is our child! You can't really describe the emotions...worry....stress....concern having a sick child does to you. I can't imagine what some parents go through having a child that is so much worse off than Mya. I honestly don't know how they do it! This has been enough stress for all of us that's for sure! We have had great friends...family...and an entire community behind us and that has made all the difference! Thank you to everyone for all your support!
We will keep updating the blog.....good or bad! But I think a lot of those bad days are behind us! For now we are going to keep on plugging away and hopefully be home in Indiana mid-March! I guess we are going to skip winter all together!
She is doing a great job controlling the vomiting with the food but the milk is much harder for her. So basically we give her the 6-7 oz. of milk over an hour or so with the sippy cup. (It's by no means a perfect meal or situation but much better than the tube!) Over time she will get more and more used to these bigger volumes!
She is crying less and less with the meals and has had several with no crying at all. The meals are taking less than 20 minutes consistently so we are on track!
We had a great visit with my parents and it couldn't have come at a better time for us! We are a little over half way through! But I feel like we are definitely beyond a lot of the hard stuff. We are going to have some bad meals here and there when we get home and I'm sure a few vomits here and there. But overall this is going to be a success! We are NOT going back to that horrible feeding tube!
In just a few short weeks we have seen a total change in Mya. It's pretty amazing really! She still has her share of issues but of course we can't expect them to all be gone with a snap of a finger! But for now we have a growing....healthly...happy....eating....drinking....tube free child!!!! What more could we ask for!!
We have several months at home where we are going to have to stick to the protocol to a T. I will have to be home at meal time no matter what the circumstance. I guess I don't have a "typical" 8-5 job.....but my job is going to be keeping Mya eating and drinking and off her tube for several months. After 2-3 months with the help of Ben we will progressively transition her off purees to "regular" foods.
I know this all must seem a bit crazy. Mainly because she looks like any other kid you would see but she has developed a feeding disorder. Matt and I are both dedicated to getting her well! I am so unbelievably grateful for Ben and his services. Without his help I honestly think Mya would have been tube fed for several more years. It honestly scares me to think what kind of mess we would be in then!
I hope one day we look back at this and it is a small thing. But for the last year and a half it has been very real to us. We have went to doctor after doctor...therapist after therapist. We have done test after test. It has consumed our lives because this is our child! You can't really describe the emotions...worry....stress....concern having a sick child does to you. I can't imagine what some parents go through having a child that is so much worse off than Mya. I honestly don't know how they do it! This has been enough stress for all of us that's for sure! We have had great friends...family...and an entire community behind us and that has made all the difference! Thank you to everyone for all your support!
We will keep updating the blog.....good or bad! But I think a lot of those bad days are behind us! For now we are going to keep on plugging away and hopefully be home in Indiana mid-March! I guess we are going to skip winter all together!
Friday, February 12, 2010
Day 21 & 22 of Therapy
My Mom and Dad got here yesterday so we enjoyed one of the local parks, went to Downtown Los Altos to a few shops, and also went up in the Foothills to look at some of the million dollar homes. Best of all....my Mom cooked for us!!! We have breakfast at the hotel every day and they also provide dinner Monday thru Thursday so some good home cooked meals were great!!! A ham sandwich for lunch for the last month is getting really old really quick! haha!
Today we went to the Winchester House in San Jose. It has been great weather so it was a good day to spend a few hours there this afternoon! Since Matt came to California a few years ago with his buddies he is letting me go with my parents tomorrow to take a tour of the town. (God bless him that I get to miss lunch and supper meals with Mya!)
Mya has had a good couple days since I blogged last. Her dinner meal tonight she did NOT gag even one time!!! We are taking baby steps each day but we are going to get there! At this point Ben thinks we are hopefully still on schedule to have two more full weeks of therapy with him and then 1-2 weeks on our own. So....about another month and we will hopefully be home! Mya went all day completely vomit free! Hopefully we have more and more days like today!
We thank everyone for their continued support!! We will keep updating you throughout our journey!!!
Today we went to the Winchester House in San Jose. It has been great weather so it was a good day to spend a few hours there this afternoon! Since Matt came to California a few years ago with his buddies he is letting me go with my parents tomorrow to take a tour of the town. (God bless him that I get to miss lunch and supper meals with Mya!)
Mya has had a good couple days since I blogged last. Her dinner meal tonight she did NOT gag even one time!!! We are taking baby steps each day but we are going to get there! At this point Ben thinks we are hopefully still on schedule to have two more full weeks of therapy with him and then 1-2 weeks on our own. So....about another month and we will hopefully be home! Mya went all day completely vomit free! Hopefully we have more and more days like today!
We thank everyone for their continued support!! We will keep updating you throughout our journey!!!
Wednesday, February 10, 2010
Day 19 & 20 of Therapy
The last two days have been going well. We are seeing small improvements each meal. ( For instance she is not crying so much and holding her head straighter for bites) My parents are arriving tomorrow around lunch so we are super excited to see them! Mya has officially been off the tube for a 8 days!! She is consistently eating around 1300-1500 calories a day and drinking around 20 ounces or so of milk.
Matt and I have been home sick the last couple of days so the visit from my parents is coming at a good time! We have almost been here for a month so it is taking its toll! But we know this is best and basically the best way to get Mya off the tube permanently. Keeping praying for Mya she is still struggling but each day we see improvements!
Matt and I have been home sick the last couple of days so the visit from my parents is coming at a good time! We have almost been here for a month so it is taking its toll! But we know this is best and basically the best way to get Mya off the tube permanently. Keeping praying for Mya she is still struggling but each day we see improvements!
Subscribe to:
Posts (Atom)
