Well day 2 brought some progress with Mya's eating but also brought out a lot more of her bad habits. First I would like to just say how unbelievably grateful I am that we are here and able to work with Ben. He is great at this job and very compassionate. I don't think Matt or I really realized the hole we were digging at home with Mya's eating.
Mya basically will do anything to make herself throw up. She threw up a lot in the past to make her self feel better since tube feeding has been so uncomfortable for her. And now it has just become a pattern for her. Today she basically did anything and everything to get out of eating. For example she pulls her tongue back when taking bites so that she can gag and choke on food to initiate the vomiting. Once Ben caught on and did not allow her to do this she would attempt to ram her fingers so far down her throat to initiate her to vomit. So far he was been fairly successful not allowing her to vomit...but ultimately she has ended up succeeding at least once every feed. Her feedings are taking any where from 35-45 minutes and she gags probably at least 20 times....so one vomit per feed is pretty good at this point.
Today at lunch I almost couldn't physically watch the feeding. Although I know that we are doing what is best for her it is absolutely horrible! Mya has no medical reason why she can't eat and we need to get this problem solved before it's too late.
She does bounce back really well and within minutes of being done with the feedings she is playing, smiling, and giving Matt & I hugs and kisses. Yesterday Ben had told us we would hopefully see an increase in her drinking the more we were able to get her to eat and we have. Today she actually went to the fridge and started to say "milk...milk." She has never done that!!! We are definitely going to be here awhile but I think we are doing the right thing!
It has been raining...raining...and raining even more here! So we are not on a vacation by any means! haha! We have been up at 4:00 a.m. every morning and are at the clinic for feedings at 7, 12, and now 5. Then of course whatever calories she doesn't get in during the day we have to give overnight! What a mess! I will update more tomorrow so hopefully it's a better day!
Tuesday, January 19, 2010
Monday, January 18, 2010
Day 1 of Therapy
Mya did great for her first day at therapy with Ben. It was actually a lot harder than what I anticipated it would be. Don't get me wrong, Mya left each feeding smiling and playing and her happy go lucky self. But it was an exhausting day for Mya and the two of us. We did three feedings with Ben today and that was plenty! Mya was wore out! We are still adjusting to the time change and were up again at 4:00 a.m. this morning California time!
Mya's feedings each got better as the day went on, but there was a lot of crying, gagging, vomiting, and refusing. I am so happy that we are here, but wish we would have done this sooner. The older she gets the harder this is going to be. I think Matt and I are coming to terms that Mya's feeding disorder is actually worse than what we thought. She only ate 360 calories of food today and in reality needs well over 1000. She spit a lot of the food out so one bite would take him 5-10 times to try to get her to swallow. She would pack the food in her cheeks or simply just sit there with the food in her mouth not wanting to swallow. Ben is very positive with her and does not use force what so ever. We have a long way to go but for Day 1 she did great!
By the last feed she was actually opening her mouth for the spoon (in not to good of a mood about it but was opening her mouth). At this point until she progresses Ben does the feedings with Mya and Matt & I are in a completely separate room watching everything on a TV. Although it is hard to watch I know that we are doing the right thing.
Ben is a very down to earth kind of guy and as a father of 3 he knows what it is like to have your little baby go through tough times! We talked a lot today about her history and our health care here in the U.S. Basically these parents are sent home with a "quick fix" feeding tube and end up with a complete mess when their children get hooked on them and develop oral aversions.
Overall day 1 was a success but I have to admit I hope the ride gets easier! Thank goodness Matt is here with me!!! Keep praying for Mya!!! I know she can do this!!!
Mya's feedings each got better as the day went on, but there was a lot of crying, gagging, vomiting, and refusing. I am so happy that we are here, but wish we would have done this sooner. The older she gets the harder this is going to be. I think Matt and I are coming to terms that Mya's feeding disorder is actually worse than what we thought. She only ate 360 calories of food today and in reality needs well over 1000. She spit a lot of the food out so one bite would take him 5-10 times to try to get her to swallow. She would pack the food in her cheeks or simply just sit there with the food in her mouth not wanting to swallow. Ben is very positive with her and does not use force what so ever. We have a long way to go but for Day 1 she did great!
By the last feed she was actually opening her mouth for the spoon (in not to good of a mood about it but was opening her mouth). At this point until she progresses Ben does the feedings with Mya and Matt & I are in a completely separate room watching everything on a TV. Although it is hard to watch I know that we are doing the right thing.
Ben is a very down to earth kind of guy and as a father of 3 he knows what it is like to have your little baby go through tough times! We talked a lot today about her history and our health care here in the U.S. Basically these parents are sent home with a "quick fix" feeding tube and end up with a complete mess when their children get hooked on them and develop oral aversions.
Overall day 1 was a success but I have to admit I hope the ride gets easier! Thank goodness Matt is here with me!!! Keep praying for Mya!!! I know she can do this!!!
Sunday, January 17, 2010
Our first day in the big city!
We decided to take advantage of a free day in California and did some sight seeing today! We figured it would be all business starting tomorrow morning! Our place is only about 30-40 minutes from down town San Francisco so we made the trip!
It was very cloudy today and rained for awhile but it was still worth the drive! We took Mya to her first aquarium and walked around Pier 39. We were able to see Alcatraz from the shore and drove down the Gold Gate Bridge! San Francisco was much bigger than what I had pictured in my mind. It's just town house after town house....hill after hill. Such a different way of living than what we are used to!!
We are so excited to meet Ben tomorrow morning! I hope Mya and him click well together! I will be sure to post tomorrow night after we get home! Hopefully we can start adjusting better to this time change! We were all up at 4:00 in the morning California time ready to go and nothing was open! haha! All the grocery stories here don't open until 7:00 a.m. here!
It was very cloudy today and rained for awhile but it was still worth the drive! We took Mya to her first aquarium and walked around Pier 39. We were able to see Alcatraz from the shore and drove down the Gold Gate Bridge! San Francisco was much bigger than what I had pictured in my mind. It's just town house after town house....hill after hill. Such a different way of living than what we are used to!!
We are so excited to meet Ben tomorrow morning! I hope Mya and him click well together! I will be sure to post tomorrow night after we get home! Hopefully we can start adjusting better to this time change! We were all up at 4:00 in the morning California time ready to go and nothing was open! haha! All the grocery stories here don't open until 7:00 a.m. here!
Saturday, January 16, 2010
We are here!!!
We got to California safely today! We are getting things settled in our room and getting familiar with the area. So far so good! Both legs of the flight went well....Mya actually slept from Denver to the San Jose airport so both Matt and I were able to take a little nap!
We are really excited to get things started on Monday morning but of course have a ton of different emotions going on at the same time! Mya threw up just as we were leaving for the airport this morning and I thought to myself....maybe just maybe that would be the last time she would have to vomit without truely having the flu!
She was such a trooper today and I couldn't be more proud of her! We are planning to take it easy tomorrow since we have a big week ahead of us! We are 3 hours behind here in California so that will take some adjusting to. (It's only 5:45 here and Mya is already asleep!)
We have recieved so many emails, cards, phone calls, visits, and fb messages!!!! We are so thankful that we have so many friends and family members that are behind us!!! Thank you everyone!!!
We are really excited to get things started on Monday morning but of course have a ton of different emotions going on at the same time! Mya threw up just as we were leaving for the airport this morning and I thought to myself....maybe just maybe that would be the last time she would have to vomit without truely having the flu!
She was such a trooper today and I couldn't be more proud of her! We are planning to take it easy tomorrow since we have a big week ahead of us! We are 3 hours behind here in California so that will take some adjusting to. (It's only 5:45 here and Mya is already asleep!)
We have recieved so many emails, cards, phone calls, visits, and fb messages!!!! We are so thankful that we have so many friends and family members that are behind us!!! Thank you everyone!!!
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