Wednesday, February 24, 2010


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!!!!

Sunday, February 21, 2010

More pictures from the visit with Grandma & Grandpa


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!

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 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 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

Watching a movie at the clinic!

At the Winchester House!

Opening a few presents that Grandma & Grandpa brought!

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 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!!!

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!

Monday, February 8, 2010

Day 17 & 18 of Therapy

Day 17 & 18 have been a little tough. Mya just can't seem to be able to tolerate food and milk mixed. Right now we are focusing again on the food and will add milk back in after a few days. She is drinking plenty in between so we are still tube free. This last three weeks has been a roller coaster ride to say the least!

I think the home sickness is officially setting in.....I won't lie! But unfortunately as much as we are ready to come home Mya is not! We will be here for at least three more weeks of therapy and a week of going at it alone here in California before we fly back home. So, mentally we are preparing to be gone for at least another month.

Mya is still pretty miserable during the meals but is running out of ways to retaliate. So far Ben has had a solution to everything she has thrown at him so hopefully soon we can get the drinking under control. The biggest problem right now is getting her to realize she has to burp. Being tube fed almost her entire life she has not had to burp or handle large quantities of anything in her stomach.

On the brighter side! We received a ton of cards, emails, and packages over the week and are so thankful we have people cheering us on back in Indiana! Although the Colts didn't pull off the big win....we were loyal and sported our Colts gear for the big game! We had made a trip to the grocery that day and the man that checked us out was laughing and said..."Well you are the first people I have helped today that are Colts fans!" Talk about feeling like an outcast! People aren't too fond of the Colts here I guess!

Saturday, February 6, 2010

Look at those cheeks!!

Day 16 of Therapy

Today was a great day for vomit at all!!!!! But instead of vomiting with the food now she has decided to do it with the milk! We will get it all down pat but she is quite the challenge. Mya was not vomiting previously with the milk for several days in a row so I have total confidence she can do it!

Ben was going to go home and think about what to do to cure the problem but we may space out her food and milk a bit. (We typically give all the food and then immediately do we may wait at least 15 minutes in between.)

Mya has officially put on 1 pound 1 ounce of weight!! From the pictures you can tell how happy and healthy she looks! We may actually start cutting back some of the calories in her food so she is not putting on weight so rapidly! Who would of thought!

Overall it was a great day! She is really getting over the gagging and the idea of wanting to vomit which is great! We are slowing the feedings down and slowly molding it to what a typical meal looks like! She is also doing great hydration wise and made up for the milk vomiting in between the feedings. I couldn't be more proud of her! She has been great through out this whole journey! We have been gone for three weeks now! It's been hard being away from our family and friends but so worth it in the end!

ps. We have also been pacifier free for 3 days!!!

Last but not least.....GO COLTS!!!!

Friday, February 5, 2010

Day 15 of Therapy

Day 15 has by far been the best day thus far! Mya has drank over 23 ounces again and ate 1577 calories in food today!!! WOW!!!! She finally went an entire day without having food vomit! (She is still having some old food/milk vomit at the beginning of the meals...basically what is left in her stomach when the meal starts. Which is very normal until she adjusts to her new diet.)

She is showing absolutely NO signs of aspiration! We are still slightly thickening her milk but hopefully in the next few months we can eliminate that as well! So four days without anything per g-tube!!! Mya's last meal was awesome today! When Ben came out I could see the excitement in his face! We are making progress but still have a few weeks of therapy to go!

I am so thankful that we are here and getting help! I have been so unbelievably disappointed with the healthcare we have received over the last year and a half with Mya! It is all behind us but it is still hard to see her go through this! I really believe if we would have received the right help in the beginning we wouldn't be sitting here today! I hope with our experience we can help other families not have to go through this process.

We are working 7 days a week until we go it's all business!! Prayer is a great thing and I couldn't be anymore proud of Mya! She has been such a trooper through all of this!!!!
Bath Time!

Our little milk drinker!!! Go Mya!!

Thursday, February 4, 2010

Day 14 of Therapy

Officially 3 days off the tube today!!!! Mya drank 23 ounces of milk today and ate 1343 calories of food! We are taking baby steps toward no gagging or vomiting with meals. But this is by far going to be our biggest struggle with her. It is a bit concerning that we have been here for almost 3 full weeks and these behaviors are not gone but we also have to consider her past. She has a strong history of vomiting daily, feeding tube intolerance, and volume intolerance with feedings. So, we shouldn't be overly shocked that these are the problems we are facing in therapy! We build habits for over a year so unfortunately it is going to take time to break these.

On the bright side, Mya is less than 2 ounces away from gaining a pound!! An entire pound almost!! She is getting a little belly on her now and a little fat roll on her wrist! Her energy level was off the chart before and now that she is getting more calories she is bouncing off the walls with energy!! She is turning into such a big girl!

Although we have no guarantee about the outcome of the treatment I feel like we are doing the right thing. Mya's feeding disorder was getting worse by the day and we needed to take action so I feel very fortunate to be here! We also feel very fortunate for all the support we have from everyone back home! Thank you so much for the continued support! We are really starting to miss our family and friends so all the emails, cards, texts, and calls make our day a little easier!

We are working through the weekend and basically not missing any therapy until Mya is stable and off the tube for certain! I am really looking forward to my parents coming out next week to give us a little dose of reality! Hope everyone has a great Friday!

Wednesday, February 3, 2010

Day 13 of Therapy

Mya had a great day today! Day number 2 off the tube is official!!! Mya drank over 23 ounces of milk today and had 1487 calories just from food!!! Matt and I are soooo excited!!! Ben told us today that there is no going back on the tube and I think he is right!!!

Mya did have a small vomit with the last feed today but still got in the number of ounces of food and drink for the day! We are making baby steps each day toward a vomit free eating and drinking little girl!!! She is still not happy about eating and actually kicked Ben during a meal today!!! The drinking has become a happy thing so hopefully soon the eating will become a positive experience!

Mya is also sleeping through the night!!! We have all adjusted to the time change and are getting sleep! Thank goodness for that!! We are very excited to see what the rest of the week holds for Mya! Although we are ready to get home it is going to be several more weeks before we do so. Matt has been great so far! We have never been gone this long and I think we are doing pretty well so far! Hope everyone has a great rest of the week! Thank you again for all those who are praying for us!

Tuesday, February 2, 2010

Day 12 of Therapy

It's official! Mya went an entire day without getting anything not even water through her feeding tube! She ate 1376 calories of food today plus drank a little over 20 ounces of milk! Mya has not went a day without getting a tube feeding since before she was 4 1/2 months old!!!

What an accomplishment! We have a long way to go but are on the right track! We are gradually increasing her milk intake throughout the day. Hopefully Wednesday brings even better results!

Mya's 18 month Pictures

Monday, February 1, 2010

Day 11 of Therapy

Today we got back in the swing of things....Mya took a total of 1285 calories today and didn't actually lose any weight over the weekend! She got back in the groove of drinking again after lunch! We actually had a horrible night on Sunday. Mya woke up multiple times screaming bloody murder for what seemed like forever. She was so upset that we were having a hard time giving her tube feedings because the milk would not even go down! She was waking up hungry but not knowing what to do about it!

I am so glad we are back to therapy and working straight through this weekend! Hopefully tomorrow will be Mya's first day without use of her g-tube! That's the plan anyways! She actually did very well her last feeding and went without a peep for over half of it. So we are hoping she starts to let her guard down a bit with Ben. She is really warming up to Jessica and smiles and plays with her. We are adding in a drink "snack" in the afternoon to give her more practice with the open cup. But overall today was a step in the right direction.

My parents officially booked plane tickets today to come out and see us for a few days late next week. So, it will be great to see them! Matt and I have never been away this long so it will be great to see a familiar face and I know Mya will be ecstatic!