Mya Marie

How Sweet It Is!!

2010-12-10T16:26:00.000-08:00

Mya is doing great!!! She is weighing more than ever and doing so well! She is finally off all the thickener in her drink and can even have water now!! She was also discharged from Cincinnati Children's Hospital! I started a 4 day a week job at Clarian so Mya is now going to daycare 4 days a week and loves it! Things are finally moving in the right direction in our household!!!

We feel very blessed for all the support we have received over the last 2 & 1/2 years!!! We have a growing, potty trained, intelligent little girl on our hands!!! Could life get any better than that??

Here is a little article from Los Altos Feeding that we did after leaving California last winter! February 2nd will be the "anniversary" that Mya was officially done with tube feedings!!! Although she has no memory of the therapy or being tube fed I still think it will be a special day for us!!!

http://pediatricfeeding.org/testimonial.htm

Happy Holiday!!!!

Happy 2nd Birthday Mya Marie!

2010-08-13T20:27:00.000-07:00

Has it really been 2 months since my last post??

2010-08-13T19:58:00.000-07:00

I can't believe I have not posted anything for the last 2 months!!! But sometimes no news can be good news right! Overall things are going well with Mya! She just celebrated her 2nd Birthday on July 28th and reached 23 lbs. exactly! We went and spent 2 weeks at the program in Evansville and are actually going to spend more time there in September.

Since Mya has been eating everything by mouth a few "new" problems have arised that we are working out. We are trying a medicine now to help stimulate her stomach to empty a bit quicker. (without going into great detail....she was vomiting up handfuls of food that should have been processed hours prior) So basically she has all this old food sitting in her stomach so she does not feel overly hungry. We did a one month trial with little result but have increased the dose of the medication and so far are pretty happy with the result.

When we spent the two weeks in Evansville we worked a lot with making the meal more constructive. She eats in her booster seat at all her meals except for the occasional snack and we used a timer until she got used to sitting down and eating for 20-30 minutes at a time. She totally understood the timer concept and knew that she had to sit and eat until the timer went beep-beep!

She still has volume issues with mixing a lot of drink with food but we are able to manage and she drinks plenty of fluids throughout the day. She is also drinking some juice now which she never did before. We are gradually cutting back the thickener in her milk as well and have not recognized any signs of aspiration. Overall the doctors in Cinci are happy with her growth and so are we! She has had a few head colds over the summer which never seems to help her eating.

She is still lacking in her chewing/swallowing skills. During her evaluation she was placed at the eating skills of an 11 month old. But really she did not eat/drink much at all by mouth for the majority of her life so how could be really expect her skills to be age appropriate. We also have been able to work with her oral sensitivity issues as well.

I have actually started back working on Monday's and Wednesday's at the Health Clinic of Monon which has been great. I work with a great group of people and I think it's been a good opportunity for me! Mya also fractured her leg a few weeks ago and ended up in a cast for a few weeks over her Birthday! If it's not one thing it's another with the poor kiddo! She talks in full sentences now...knows her colors....where she lives...her full name...shapes...etc. She is at the age where they love peek-a-boo and she absolutely loves being outside on the farm!

We thank everyone for their continued prayers for Mya! Her tube site closed in a matter of 4-5 days without any problems at all!!

Mya is officially tube free!!!!

2010-05-27T10:28:00.000-07:00

We spent the last couple days going to doctor's appointments at Cincinnati and the hospital in Evansville. It was a long couple of days but well worth the trips! We were able to take Mya's feeding tube out on Tuesday!! (I was actually the one that removed it while the doctor held her down!) She did well and is following her growth curve! The doctors would have preferred to leave the tube in another month or two but she has been getting horrible granulation tissue and I couldn't have her go through skin burning for the next month or two. She did have to have it done right before we took it out to clear up the extra skin but so far so good. It is not leaking much at all. We have to change the bandage 2-3 times a day but other than that it should grow shut on it's own. We go back to Cinci at the end of June for them to check it and make sure she is still growing appropriately. If the site is not closed by the end of June she will probably have to have it surgically closed. Let's pray that doesn't happen!!

What a great day!!! She had a feeding tube since she was 4 1/2 months old so what a change!!

We had her evaluated at the Feeding Clinic in Evansville as planned to see if they could help us along with her feeding skills. Don't get me wrong.....Mya is doing great eating compared to 6 months ago but she does lack some of the basic skills of chewing well...lateralizing food.....etc. She takes very small bites so meals take usually 35-45 minutes. (For example a typical child her age would eat a chicken nugget in 4-5 bites and Mya eats it in 15 or so bites.)

Mya is capable of eating and drinking but needs help fine tuning all the skills she didn't use for the first year and a half of her life. We loved the facility in Evansville and think they can really help her take the last step in her eating problems!

We are so excited for a tube free child and are so thankful for all the prayers along the way! We are waiting to hear back about insurance approval for the Evansville program! We'll keep you posted!

Happy Mother's Day!

2010-05-08T19:11:00.000-07:00

I think I have to be the proudest mom on the face of the planet!! Mya is doing so well with her eating and drinking I just can't believe it! She ate an entire hot dog tonight!! I am so unbelievably proud of her!

We truly have soo much to be thankful for!! I couldn't have done it without the support of my family and friends!! Everyone has been so amazing!! I feel each day that my worries over Mya's eating are getting less and less. We randomly put her on the scale at home and she is weighing more than she has ever weighed so she is doing great!

I am so grateful for the opportunity to go out to California and get Mya help! Thank you to all those who helped us out financially and supported us! I am keeping all the cards.... pictures.... valentines...etc. to show Mya when she gets older all the people that love her and prayed for her! We are so thankful!! She went from getting over 90% of her calories via feeding tube to being 100% orally eating and drinking!!!

We go back to the doctor at the end of the month so I am really hoping to get the tube taken out. She is getting more granulation tissue built up and I don't see any sense on putting her through skin burning again at all!! So cross your fingers they let us!

Happy Mother's Day to all those great Mommy's out there!! But I have to tell you...I think I was blessed with one of the best Mom's out there!! I love you Mom!!!

Nothing new!

2010-05-03T11:26:00.000-07:00

Nothing new on our end!! Mya is still chugging along with her eating and drinking. She had chicken and noodles today for lunch! The vomiting at this point is few and far between. I think we have had one in the last 2 weeks! She is able to mix her milk and her food now as well and is doing fine with it!

She is still maintaining her weight (according to our home scale) and maybe even gained a few ounces! We are going for an evaluation at the hospital in Evansville next month to see if they think they can help her at all. But secretly I am hoping we won't have to end up needing their help. We are all ready to enjoy the warm weather that's coming and try to just relax for a change!!

Cinci Appointment

2010-04-20T18:50:00.000-07:00

Overall the appointment with the Feeding Team in Cincinnati went well and was reassuring. We are all not quite ready to take that tube out permanently but we were able to get a new one put in and it fits so much better!

The doctor's were very pleased to see all the progress Mya has made since we were there in November for sure. She went from being like 90% tube fed to eating (although it's with a lot of encouragement) and drinking on her own!

I love Cincinnati because I feel like they look at the whole picture instead of just focusing on a growth chart. I don't need a growth chart to tell me that my kid is small....I just want to know that she is healthy!! Which they think she is!! For her height....she is 93% on her weight! So for her height she weighs a totally appropriate amount.

We are having to work pretty hard at times to encourage Mya to eat her meals but it is happening. We are looking into going to Cincinnati or possibly a hospital in Evansville where an OT....speech therapist....behavioral therapist....etc could work with her for 1...2....3....or how many ever weeks they find appropriate. The full team was meeting after we left so they are going to let me know what they decided within the next week hopefully.

So...we'll see! For now we are going to keep doing what we are doing and add a lot of butter....cream....etc to add some fat to her meals. She has come leaps and bounds in the last few months for sure! They also mentioned a medication that stimulates hunger but right now we are not going to go that far yet. At least we know that their is help out there if and when we need it!

2010-04-18T11:06:00.000-07:00

Mya has been a week on solid table foods now and we are still plugging along!! Overall she is doing great!! We have to make eating fun and sometimes even a game but that's okay for now. She especially does well watching others eat what she is having. I guess she thinks.....well since Mommy is eating it....it can't be that bad! haha!!

Her cousins have been wonderful for her to be around since they are more her age! Emma gives her high fives for bites and we all clap for the kids when they eat so well! We are going to keep the positive comments coming and hope for the best!

She has tried a ton of new foods over the last week....even PIZZA!!!! I thought I would never say that my kid ate pizza!! We leave tomorrow for Cincinnati so I'll be sure to update what happens at the appointment but I'm hoping they are very very pleased with how well she is doing!

2010-04-18T11:01:00.000-07:00

Having ice cream with her cousins!!! Can you believe it???

Mya eating spaghetti!!! You can tell from the picture I'm one proud mama!!

Best day ever!

2010-04-14T08:57:00.001-07:00

Yesterday was by far Mya's best day of eating regular table food since the little squirt was born!!! We are so proud of her!!! So far she has been two whole days with all table food and no purees. We are hoping and praying that this trend continues!!!

Yesterday we went to Wendy's and she ate part of a cheese burger and french fries!!! To be honest she had never eaten the bun....hamburger...and cheese in one bit but yesterday she did!!!! We are all totally excited!!

We have had a few little vomits here and there but nothing that is not under control. We are heading to Cincinnati next Tuesday for them to take a look at her and get a back-up plan in place if this eating does not continue. Plus her button is sticking out way to far and she needs it re-fit.

Although Ben's method's were strict I 100% believe that's what Mya needed to get over this hump. She needed someone to push her and that's exactly what he did. She has overcome a lot of problems in the last few months. We still have a ways to go but we will get there! Trust me...we won't give up until we get there!

For right now we are doing at least 5 smaller meals with her a day until she gets used to eating bigger amounts all at once. Thanks to everyone for their continued prayers! I went to make a quick Wal-Mart trip the other day and ended up there for almost 2 hours because I saw so many people that asked and cared about her! What a great feeling it is to know that Mya is so loved!!

First full meal!

2010-04-13T08:54:00.001-07:00

Mya had her first full meal of table food last night!!! She ate an entire meatball, all her potatoes, and all her corn!!! I hope we are slowly but surely making our way to a regular diet for her! Hopefully every day just gets better and better!

Mya had her first tractor ride with Matt yesterday since he started planting. Hopefully we have a smooth spring and things can get back to normal around here! Sometimes I wonder if things really are ever normal....haha!!

Keep those prayers coming for miss Mya!!! She is doing great!

2010-04-13T08:43:00.000-07:00

Our little farm girl!!!

Riding with Grandpa!!

Easter picture with Daddy!

Cheese!!

Their favorite toy.....a whistle!!!

Happy Easter!!!

Update since we have been home!

2010-04-09T07:23:00.001-07:00

A little update on Mya since we have been home. She is still off her feeding tube and wanting to drink milk like a champ. She is pretty much maintaining her weight at this point but at least she is not losing. We are really struggling and it has been tough but every week is getting a little better. We have been in close contact with Ben and have sent him feeding footage twice now to get any feedback that may help us out.

Our attempt to keep her healthy miserably failed since she already has a cold...cough...and runny nose. I swear....any little bug the poor thing gets! The extra mucus is just never good for a kid that loves to puke! I know....you totally want to hear about my kids mucus! We have seen a spike in her vomiting since she has gotten a cold but it's manageable. (She is still able to keep enough down to stay hydrated and full of energy for sure!)

I wish I had a better post to type but it is what it is! She is showing a lot of resistance to eating the purees but with time we are slowly seeing her guard go down. We are going to stick with it for a few months and see what happens.

No matter what happens we are going to keep fighting for her!!

SWEET HOME INDIANA!!!

2010-03-23T14:39:00.001-07:00

We finally made it home last night after being gone for over two months!!! YAY!!! Mya has been off her tube now for 7 weeks!!!! The trip home went pretty smooth but boy were we excited to get to the house!!!! It was almost weird walking in!!!

I think I have a whole new appreciation for our home....family....friends.....you name it!!! I missed home and everything about it and so did Mya!!! We were actually awake until 1:00 in the morning because the kid wouldn't go to sleep and stop playing with her toys!!!!

We made one call to the grandparents and I think as quick as they could find their car keys they were here! What a great family we are surrounded by!! The house was spotless...we had flowers planted in our pots....groceries in the fridge....fresh baked cookies on the counter.....ballons....and a ton of welcome home gifts!!!! We couldn't be happier!!!! Thank you to everyone that has been there for us through this journey!!!!

So far the feedings at home have been going fairly well. We made our first batch of food today as well. We will be feeding her these purees for a few months and then move on to solids so it's going to be several months until things are "normal." But slowly but surely we are making our way to a tube free...eating...drinking...healthy little girl! I will for sure continue to update the blog with all her progress!

We go back to Cincinnati the end of May and by then the tube will for sure be coming out!

Wanted to just write a quick update but know I have to unpack while the little critter is napping!!! God Bless!

So Excited!

2010-03-20T21:59:00.000-07:00

We are still coming home on Monday and can't hardly wait!!!! We have a long road ahead of us but it will all be worth it in the end!!! Thanks again to all our supporters!!! We couldn't have done it without you!! There really is no place like home!

2010-03-20T21:48:00.000-07:00

Pretty Girl!
Looking at the ducks with Daddy!

Walking to the pond!

We're Coming Home!!!!

2010-03-16T20:53:00.001-07:00

We officially booked our flight today to come home on Monday the 22nd!!!! We are sooo excited to get back to Indiana!!! We have the best family and friends anyone could ask for and are so thankful for each and every one of you!!!

I can't believe we are actually going to be packing up in just a few short days!!! It feels like we have been here for forever!! I'm sure as soon as the plane touches down we will feel right back at home!!! Can't wait!!!

2010-03-15T20:58:00.000-07:00

Cheese!!

Mya feeding her animals!!!

Playing so much she just fell asleep right in the middle of all her toys!

6 Weeks....No tube!!!

2010-03-15T20:40:00.000-07:00

Mya has now been 6 full weeks without use of her feeding tube! After a bit of a rough weekend we went and spent the day at the Feeding Clinic again today. Hopefully tomorrow gets even better and we can still plan to come home on the 22nd! We can't wait to get home especially since the weather is getting so much better!

Matt is anxious to get home and get back in the groove of working! He has been so great while we have been here and I know will continue to support Mya and I when we get home! Mya has been so used to having her Daddy around everyday it's going to be an adjustment for her!

She has lost a bit of weight from her very top but still well over 21 pounds!! We are going to have her weight checked every week and make sure she is getting enough calories. We have also noticed an increase in her interest in eating "normal" food.

So we definitely had a bump over the weekend but overall we still feel great about the process!

Day 2 On Our Own!

2010-03-11T19:25:00.000-08:00

Mya had a record meal tonight at supper!!!! We did the meal in 20 minutes and 47 seconds!!! That's the best we have done thus far!!! Things are definitely looking up around here! I think we are going to have a bad meal here and there but overall I think we can totally handle this when we get home! If we run into problems we will video tape the meal and upload it for Ben to watch or just do a live web cam meal with him so he can help us!

I think we made a great decision by coming here! Ben has been amazing!! He is so excited for us and has had us call him after every meal for the last two days to make sure we are getting along okay!! Talk about support!!!

We are still feeling the love from back home and got some really nice cards and packages this week!!! Thank you to everyone that has thought and prayed for us over the last 2 months!!! Mya has been over 5 weeks without use of her tube and there is no going back now!!

We can't wait to get home!!!! I can't say it enough! I am looking forward to getting things back to normal and enjoying our time with our healthy little girl!!! No more doctor's appointments....no more therapy appointments.....no more tests!!!! The only thing left to do is get that tube officially out of her belly!

Thank you again and look out Indiana the Holderly's are flying home really soon!!!!! YAY!!!!

March 10th- Our First Day On Our Own!

2010-03-10T19:28:00.000-08:00

We had our first day today without Ben by our side to coach us through the feeding. Overall it was a good day. We made our ounce mark each feeding!!! We took a bit more time with the feedings but Mya also had more refusal behavior since Ben was not here. I feel like we are well on our way to getting on a plane and heading home and it feels great!!!! We are so ready to come home but definitely need to make sure we are ready feeding wise! We are hoping to head home on March 22nd!

Mya's drinking has been going great!!! We are going days at a time now with no little "burp vomits." It's amazing how she just drinks the milk now with no resistance! When my parents were here they just couldn't believe it!!! She just drinks the milk like every other kid on the block!!!

We are so proud of Mya it's unbelievable! We have seen a huge transformation in her since we have started therapy! She is finally outgrowing her winter clothes as well!! We have to finish the journey for several months to come but have already noticed Mya showing more interest in table foods that we are eating. She had several bites of yogurt the other day and some chicken this afternoon!!

Overall we had a great first day!!!!!

Picture with Mommy!

2010-03-08T20:31:00.000-08:00

Look at that happy & healthy kiddo!!!

We are proud of you Mya!!

Starting Week 8 on Monday!

2010-03-07T20:43:00.000-08:00

Today was the best day we have had thus far as far as feedings go! We are trying to stay positive but some days it is awfully hard! Especially since we have been away from home for almost 2 months! We hope (and hope is a pretty big word) that we can head home 2 weeks from tomorrow. I shouldn't even type that because it may very well be longer. We are sooo unbelievably excited to see our family and friends but at the same time we know that Mya can not get sick when we get home. We can't have any set backs at all!! So, hopefully we will be able to see everyone and keep her well!

Mya had her highest weight a few days ago at 21lbs. 13 oz.!!!!! WOW!!!! Everyday it fluctuates a bit but from a week to week basis it is definitely on the up side! I never thought that we would come home with her weighing this much!! I guess it goes to show how much nutrition plays a huge roll in her development!

So, for the time being we are trying to stay as positive as we can and just keep plugging along each day!! If all goes well we should finish up therapy sessions with Ben on Tuesday! But who knows with this crazy kid!!!

Update from week 7!

2010-03-04T10:12:00.000-08:00

I can't believe we have been away for 7 weeks now! Mya's vomiting is pretty much well under control at this point. A few problems here and there but nothing we can't handle. We started taking over therapy this week and what a long week we were in for! I left in tears after trying to feed Mya twice. It was much harder than what I had anticipated. We have watched every therapy session and felt pretty confident going into it. It was defiantly not a monkey see...monkey do kind of thing. It is hard work to feed this kid!

Matt and I had a long talk and he suggested that at this point that he become the primary feeder. He is doing an amazing job and he doesn't even have many days under his belt. Mya basically had learned with Ben that she could not refuse bites. She learned that she couldn't clamp her mouth....she couldn't block the food with her tongue....etc. Now unfortunately she has to learn that she can't do those things with Matt either. Consistency is the key....not showing emotions even when she clamps down on your finger with the death grip of a pit bull!!! He has to learn from Ben what to do when these things happen and how to correct the problem. With time she will learn and not give him such a hard time.

She is one smart little cookie that's for sure! I can't imagine how difficult this would have been if we would have waited even longer to get her treatment! I am so proud of Matt and Mya both for all that they have accomplished so far!! If I could nominate Matt for Father of the Year he would be sure to win!!! He is patient and very determined!! There is no doubt in my mind that he can do this! After a weeks at home when things calm down I will start the feeding process as well. Things will defiantly be a much easier transition by then.

We so appreciate all the continued thoughts, cards, emails, texts, and prayers!!! Mya is so loved! She has been without use of her feeding tube for a little over 4 weeks now! We hardly even notice it being there anymore! Hopefully we will be on our own feeding Mya by the end of the weekend. Then we will stay about 2 weeks to make sure we don't run into major problems before we head home! We can't wait to be home and get back to Indiana!!

A day at the park!

2010-03-04T09:58:00.001-08:00

Spending an afternoon at one of our favorite Los Altos parks!

Big Basin

2010-03-04T09:48:00.000-08:00

Big Basin National Park was about a 45 minute drive from the clinic so one afternoon we decided to check it out! It was a true test to see if Mya would get sick in the car for sure! All the turns and curves were enough for me! She handled it very well and enjoyed all the scenery as well! There are a few pictures we took along the way.

Me standing next to one of the biggest trees we saw at the park.
Pictures can't describe these huge trees!

Update

2010-02-24T17:40:00.001-08:00

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!!!!

More pictures from the visit with Grandma & Grandpa

2010-02-21T21:28:00.000-08:00

Cheese!

Drinking milk with Grandpa!

Loving that California weather!

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

2010-02-21T13:37:00.000-08:00

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!

Update on Mya

2010-02-16T15:27:00.001-08:00

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!

2010-02-12T20:28:00.000-08:00

Watching a movie at the clinic!

At the Winchester House!

Opening a few presents that Grandma & Grandpa brought!

Day 21 & 22 of Therapy

2010-02-12T20:09:00.000-08:00

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!!!

Day 19 & 20 of Therapy

2010-02-10T21:13:00.000-08:00

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!

Day 17 & 18 of Therapy

2010-02-08T19:30:00.000-08:00

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!

2010-02-06T19:49:00.000-08:00

Look at those cheeks!!

Day 16 of Therapy

2010-02-06T19:41:00.001-08:00

Today was a great day for food.....no 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 milk....so 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!!!!

Day 15 of Therapy

2010-02-05T19:34:00.000-08:00

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 home....so 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!!!!

2010-02-05T19:28:00.000-08:00

Bath Time!

Our little milk drinker!!! Go Mya!!

Day 14 of Therapy

2010-02-04T21:30:00.000-08:00

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!

Day 13 of Therapy

2010-02-03T21:20:00.000-08:00

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!

Day 12 of Therapy

2010-02-02T20:35:00.000-08:00

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

2010-02-02T08:11:00.000-08:00

Day 11 of Therapy

2010-02-01T18:49:00.000-08:00

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!

2010-01-31T19:41:00.000-08:00

San Francisco!

I never knew Mya would get so excited about a turtle!

We took Mya to the San Francisco Zoo today and had a great time! The weather has been great here so we were taking advantage of the last full weekend we will have off from therapy! Starting next week will be be seeing Ben 7 days a week! Back to business we go!!! We are excited for next week to get started. Mya ate some over the weekend but nothing compared to the therapy sessions. Her drinking also dropped off so we see a definite correlation between her eating and drinking. Hopefully we see some great results after this week!

2010-01-31T19:26:00.000-08:00

On Saturday we took a little drive to Monterey Bay and Santa Cruz. It was absolutely beautiful there!! The pictures just can't justify it! We took the 17 mile scenic drive around Pebble Beach as well!

Day 10 of Therapy

2010-01-29T19:54:00.000-08:00

We have now completed two weeks of therapy! Mya is doing much better since we arrived but is still struggling with vomiting when food and milk are combined. We have pretty much got the vomiting under control with food alone but she doesn't seem to be able to tolerate more than an ounce or two of milk with her meal.

Ben has decided that we are going to start working weekends starting this next week. Although we have only been supplementing her with the g-tube here and there he wants us to be 100% off next week without any lag time over the weekend. Mya is not his worse case....but by far not his easiest! Overall her eating is getting much better....she is swallowing the food almost every bit now and not having to prompted to open her mouth near as much.

I still have faith that this is going to work. When we first started I thought she would never get over the gagging with the food and was made a total turn around. So, there is definitely hope! She is drinking well on her own outside of the feedings so it may just take time for her body to get adjusted to digesting all this food and milk.

She gained over 2 ounces again today! So hopefully she doesn't lose a ton over the weekend! The weather has been great the last few days so we have been taking advantage of being outside! I think they have like 10 different parks within a 10 mile radius! So it's been good for Mya to see other children as well!

Hope everyone has a great weekend! We truly appreciate all the support we have from everyone back home! I know of several local churches that have put Mya on their prayer list and it is so appreciated! We are going to be here awhile but hopefully come out with great results and a healthy growing little girl!

2010-01-28T21:00:00.000-08:00

Playing at the park!

Looking at all the animals on our hike!

Opening cards Mya gets in the mail!

Watching Sunday night football!

Day 9 of Therapy

2010-01-28T20:28:00.000-08:00

Today was by far Mya's best day thus far!! She had a total of 1381 calories of food and drink with Ben today!! That's not even including all the milk she drank with Matt and I today! The vomiting and gagging massively improved today also! It's almost as if a light bulb switched on today!

She is still gagging some but it is definitely improving! Mya has also gained over 9 ounces of weight total! She finally weighs over 20 pounds!!!! We tried a high calorie milk drink and she did throw up after chugging down over 4 ounces of it. But we have now switched her to whole milk and she is doing great with drinking!

We have a ways to go but it is definitely getting better! It's so nice to drive in the car and not have to stress so much about her throwing up everywhere or pull over every 15 minutes or so to give her a tube feeding! If it weren't for the one vomit today she would have been completely tube free today! Darn! So close!

Ben said we have to start acting as though the tube is not there anymore and allow her to drink on her own since she is wanting to so much! I guess my OCD about watching every mL my child gets is over! He was kindly telling me to relax a bit and it is all going to work out!

We have a few kinks to work out here and there but overall we are getting there! It will be a few more weeks until Matt and I will probably actually feed her but eventually it will happen!

We hope to officially take Mya's g-tube out this summer when she is transitioned onto solid foods and is stable for several months! What a great day that will be!!!! I think we are going to have a big celebration!

The weather has finally gotten better so the last two days we have went to the park and went hiking! Much better than that cold Indiana weather! Mya is still talking up a storm and actually said "Excuse me" after she burped today!! How cute is that!!

Thank you again for all your thoughts and prayers!!! God really does have a plan for Mya!!!

Day 8 of Therapy

2010-01-27T19:00:00.000-08:00

Well...today was a day of puke...puke...and more puke! Not a very good day! We are going to space out her meals more since she seems to be vomiting up old food from the previous feedings. She is still wanting to drink a ton so we are good there....we just need her to hold it down!

We are going to start at 6:30 a.m. instead of 7:00 a.m. and have her last meal start at 5:00 p.m. Don't get me wrong Mya has made huge progress in the 8 days of therapy...but of course things can't happen quick enough for us as parents! She did excellent at lunch....only if she could eat like that every time!!! Mya is a tough cookie but we are at the right place to get her help!

Honestly at this point we don't have very many options! The older and older she gets the more and more difficult this problem is going to be to solve! If only we would have come months ago! Mya actually turns 1 1/2 tomorrow! So hopefully by her second Birthday this will all be behind us!

We didn't end up going tube free yesterday because the little booger went to bed so early and didn't wake up until 5:00!!! We are getting there but I'm afraid we are going to be here longer than what we were hoping it would take! But hey...look on the bright side....after 30 days we don't have to pay tax at the hotel anymore!! haha!

Hope everyone has a great week and we'll update more tomorrow!

Day 7 of Therapy

2010-01-26T18:56:00.000-08:00

Mya ended up drinking 9 ounces of milk yesterday on her own and is already up to 15 ounces on her own today! She has not received anything through her tube and as long as she drinks another 5 ounces tonight we won't use it today at all not even for water!

We started with drinking today with Ben. He uses an open cup and Mya has been very interested! The kid is walking around asking for milk....wanting more and more milk!!! What a difference. She did well with the breakfast and supper but did struggle with lunch. Ben tried to add 2 ounces of liquid right after her meal and she didn't tolerate it at all. So basically we are going to gradually build up the drinking a 1/2 ounce at a time.

I have total confidence Mya can do this! She ended up with 1053 calories for the day but basically that was the calories of food from breakfast and supper only since lunch was pretty much a wash.

I forgot to blog yesterday that she had lost a couple ounces over the weekend since we were not doing therapy but is right back up there today! This really was the right decision for us and what good timing since Matt could be here.

We will update more tomorrow but overall things are going in the right direction!

Day 6 of Therapy

2010-01-25T19:09:00.000-08:00

Mya had a total of 1085 calories today in food! WooHoo! She also drank a total of 7 oz. of milk tonight from her sippy cup! We are not doing anything different as far as the drinking goes yet. Basically just offering it to her just like usual. For some reason Ben explained normally when he gets the child to eat more solid food they just automatically start showing more interest in drinking on their own! We have not supplemented her with anything other than water in her feeding tube today! We have one more bottle to go so if she doesn't drink anymore before bed we will give that amount through her tube.

Today overall was a day of progress....she did not throw up with breakfast or lunch. But did manage to vomit twice with supper. Darn!! She is swallowing much quicker and gagging less and less. I told Matt today that I just wish we could fast forward time and be a month out of this process! Or I guess rewind time and have done things much differently!

We are going to contact her healthcare providers and hopefully persuade our insurance company to help us with some of the cost. He has had people successful in the past when they get letters from providers stating it is medically necessary for these children to receive intensive therapy. So I will have my fingers crossed! Either way I feel great about the decision we have made! When it comes to your kids you can't hold back!

We have set up skype on our computer so Mya has been able to see her family at home! I think for Matt and I it just made us miss home all the more but feel refreshed that we have loved ones supporting us! We have already received cards from people from home which is very encouraging! Thank you everyone! Mya even got her own card today and also some coloring pages from her cousin!

We are starting drinking tomorrow again with Ben so hopefully it goes well! We are going to have some bumps in the road but overall it has been a positive experience!

2010-01-24T08:53:00.000-08:00

Fun at the Children's Museum!

Day 5 of Therapy

2010-01-22T18:07:00.000-08:00

Mya had a total of 1035 calories by mouth today!!! She has also gained a little over 6 ounces of weight this week!!! We are slowly seeing improvements with Mya's feeding. She is actually getting a head cold so hopefully it doesn't get too bad!! We have also seen an increase in her interest in drinking on her own. Ben explains all of this ahead of time but now we are actually seeing it happen!!

We are taking the next two days off and I have to admit Matt & I are both ready for a break! It has been a long week! She was actually up at 2:00 in the morning today so we are still not quite adjusted to the time change! We are hoping to take a trip out to see the huge Redwood trees at some point over the weekend!

She seems to have so much more energy since she is getting an adequate amount of calories now. Not to mention 6 ounce weight gain in the first week!! Mya threw up with the first two meals of the day. But we are actually weighing the vomit and then re-feeding her fresh food of the same weight. So basically she has to understand vomit or no vomit she has to eat!

She has been waking up the in morning...goes and grabs her coat....and says "Ben!" She also knows the room now and hears the door open and starts to whine a bit knowing that he is coming. She did actually walk to him today and walked right in the therapy room so they are slowly forming a positive relationship. We do high fives after each of her feedings and now she will give high fives with him as well!

We are excited with her progress but selfishly wishing the days and weeks were going quicker! But I have total confidence with the therapy we are doing.....I mean let's face it OT just was not cutting it!

Hope everyone has a great weekend! We truly appreciate all the prayers for miss Mya!

2010-01-22T17:59:00.000-08:00

Walking to therapy! The sun finally came out today!

This is the TV we watch everyday when Mya eats with Ben!

Crazy kid!!!

Day 4 of Therapy

2010-01-21T18:47:00.000-08:00

Today went pretty well for Mya...she ended up with 728 calories of food today so a little above yesterday. She managed to throw up at every meal, but still took in quite a bit. At lunch she ate almost 5 ounces of food and then he attempted to give her milk. She did surprisingly well with the drink and took almost 2 ounces in a little over 2 minutes! But....then all went to the waste side because she threw up all over my lap within about 5 minutes! So...if she would have kept that feed down she would have had an even better day!

Ben was surprisingly happy with her drinking and from what he saw today he did not see any problems as far as aspiration. We are using thicker milk still to be safe. It is actually a pediasure type drink so it is already a thicker consistency and we are not even adding thickener to it.

So the plan is to just stick with food tomorrow....take a weekend break....and then get back to it on Monday. Since she did so well with drinking we are going to focus on the food first! We are still using Mya's feeding tube but have been able to cut out some of the milk and give water instead since she is eating so much better!

Today was a long day but I feel well worth it in the end! It's so funny because as soon as Ben tells Mya that they are all done feeding and puts away the spoon and bowl her attitude immediately starts to change. While they cleaned up today she was in the high chair for an extra 10 minutes just sitting there calm as can be....actually licking the extra food off her fingers! She was not trying to gag herself....not trying to vomit...not fussing....nothing! I really do think this is behavior related at this point. She doesn't walk around the house trying to throw up or gag herself...it is basically just when she is eating.

We have high hopes that this process is going to work since we are already seeing improvements after only 4 days! When he came in to get Mya today she actually walked over to him.....kind of crying but walked over to him!

I am understanding this process so much more each day we talk with him!! But wow...what a hole we have gotten into!!! It is just going to take time and time we have!

Day 3 of Therapy

2010-01-20T18:04:00.000-08:00

I guess the 3rd time is a charm!!! Mya actually has gained over 2 ounces of weight already! She only had gained 1 ounce in over 2 months!!!! Things are definitely going in the right direction! Can you even believe it!!!!

She ended up taking 9.8 ounces of food today for a total of 714 calories!!! That is the most food she has eaten since she was born!!!! We have a long long way to go but Matt and I are seeing a light at the end of the tunnel. (It's a very small light....but hey it's a light!!)

After doing some calculations....Mya typically only gets between 600-700 calories per day with her tube feedings. So, the fact that she ate 714 calories worth of food is HUGE!!! She is still trying her tactics and trying to throw up but the refusal is slowly disappearing. She is still crying during the feedings but that is also slowly disappering.

What a great day! She did vomit with the first 2 feedings of the day, but made it through the entire last feeding vomit free! We are going to have ups and downs since she still does have to eat more than 9.8 ounces of food but we are at least seeing improvement.

We have not even gotten to point that we can work on drinking but may try on Friday if things go well tomorrow. What a day!!! Thank you so much to all our family and friends!! We never could get through this without you!!! Mya is such a special little girl to all of us!!! We just want her to be healthy and I think we are at the right place to accomplish that goal!!!

God is great and he is going to get us through this!!!! Thank you everyone for all your thoughts and prayers!!!

Day 2 of Therapy

2010-01-19T18:42:00.000-08:00

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!

2010-01-18T20:48:00.000-08:00

Playing at the clinic! Our first day at therapy!

Day 1 of Therapy

2010-01-18T20:23:00.000-08:00

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!!!

2010-01-17T16:26:00.000-08:00

After crossing the Golden Gate Bridge.

San Francisco

The bridge from a distance.

At the aquarium!

Mya touching her first star fish!

Our first day in the big city!

2010-01-17T16:06:00.000-08:00

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!

2010-01-16T17:47:00.000-08:00

At the airport!

We are here!!!

2010-01-16T17:31:00.000-08:00

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!!!

Merry Christmas & Happy New Year!

2009-12-31T11:51:00.000-08:00

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!!!

2009-12-07T11:32:00.000-08:00

Mya's Christmas Pictures!!

Big Girl Bed

2009-12-02T09:45:00.000-08:00

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!

2009-11-22T12:26:00.000-08:00

A day at the park!!!

2009-11-22T11:59:00.000-08:00

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!!!!

2009-11-06T11:11:00.000-08:00

Happy Halloween!!!

Playing with Grandma at the hotel in Cincinnati!

Cincinnati Appointments

2009-11-06T10:42:00.000-08:00

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!

Appointment

2009-10-30T05:47:00.000-07:00

Well....Mya's weight was only 19 lbs. 8 oz. So that means she only gained a half a pound in 3 months. She dropped pretty significantly on the growth chart for her weight. Dr. Woods was glad we are headed to Cincinnati next week to see what they have to say. She didn't seem to discouraged at this point since we have just recently got her 100% off the formula.

Dr. Woods said that it is not affecting her development mentally or physically at this point. So hopefully Cincin has some good advise and the pediasure will help her start to gain some more weight!

We both received our seasonal and H1N1 shots last week so hopefully we will keep all this sickness out of the house!

No More Formula!

2009-10-27T12:23:00.000-07:00

Mya is officially off formula now!!! YAY!! She is doing really well with it! She is taking 3 ounces of whole milk and 3 ounces of pediasure now. We are doing this mixture 5 times per day which is great because that means no more night feedings unless she wakes up and is hungry!

The home care company is also coming tomorrow to pick up the pump we used since we are doing all boluses now! We have not been using it for over a month so I feel okay with sending it back! We are slowly but surely making progress! The occupational therapist was here yesterday and she was amazed at Mya. She was pointing out the window saying pumpkin and showing her our "doggies." Penny has seen so many changes in her over the last year it's incredible. Mya can now touch her own tongue and not gag so badly that it makes her throw up....she can sip milk up a straw.....and most importantly she can eat! We will leave this coming Monday night for her swallow test on Tuesday morning so I pray that she passes!!! We have been prepping her for it so I really feel like she is safe to swallow thin liquids now.

If she passes then we need a plan to get Mya off these tube feedings. She can drink and can eat...just not enough to stay hydrated and grow! I already feel my stomach turning hoping that she passes this test. It is not an invasive test what so ever. Basically she will be sitting in a special chair with a camera next to her face. They put barium in the liquids and she drinks. As she drinks the camera video tapes and follows the milk down her throat. Either it goes in her stomach or it goes into her lungs!

In the past we have struggled with getting Mya to drink anything during the test. It is in a different environment with doctors and nurses surrounding her. Plus she is not a big drinker anyways!!! I really feel like God is going to take care of her! Things are headed in the right direction for us!! Just one more test!!!!

We go for her 15 month appointment on Thursday so I will send a quick update on her weight. I was hoping she would weigh 20 pounds but I just don't think we are quite there! Thanks again for all your continued prayers!

Update

2009-10-21T19:15:00.000-07:00

Well....so far so good with switching Mya off formula. We are half way there! I'm going to wait a few more days and then up the pediasure/whole milk amount! Things have been pretty uneventful around here! Matt has been working many late nights! So Mya and I have had a lot of bonding time!

Mya now knows where her mouth, teeth, tongue, nose, ears, eyes, hair, hands, and feet are!!! She is a smart little cookie!!!! We go next week for her 15 month check up so I will be sure to update everyone on her weight! We have not had a doctors appointment related to her feeding problems for almost 4 weeks now!!! That is the longest we have ever been without an appointment for months!!

2009-10-12T09:26:00.000-07:00

Working with Daddy in the shop!

Pumpkin Patch!
(My sister Becky and her two children Emma and Timmy)

Lookin cute!

Mya's first combine ride of harvest this year!

Sleepy baby!!

2009-10-12T09:07:00.000-07:00

Mya is finally getting a few more teeth in her mouth! She has 2 more teeth that have popped through and a few more on the way! We have all been struggling with colds around here. Nothing serious but these runny noses are getting old!

Mya is now up to 5 1/2 to 6 ounces on her feedings! Can you believe it! The goal was to get her up to 6 oz. so we are almost there! We are actually going to start the transition off the formula as well. Right now I am mixing pediasure with whole milk. We will give her an ounce of that mixture and the rest formula. We are going to slowly make that transition since her body doesn't typically respond well to change. Eventually she will get her feedings with half whole milk and half pediasure. So she calorie per ounce will still be about 24 to 25 calories her ounce.

She can basically eat any type of food now....just small bites and tiny amounts! She is still drinking thickened liquids from her cup but still just sips with meals. The other day she drank 3 oz. before noon and that was the most she had drank for months!!!

Mya has a huge vocabulary and is in the stage of trying to repeat everything you say!! Tractor, Minnie, and Elmo are a few new words she is saying! We have been staying busy despite all the rain we have been getting! Here are a few updated picture to enjoy!!

Update

2009-09-28T12:50:00.000-07:00

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!

Nothing new!

2009-09-21T09:58:00.000-07:00

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!

More News!

2009-09-11T11:34:00.000-07:00

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!!

2009-09-09T11:43:00.000-07:00

Enjoying Disney!

Mya with her cousin Emma!

Playing with her tractor!

Taking a swim in the creek with her buddies!

Drinking from her cup all on her own!!

Mya and her feeding therapist Colleen!!

Getting back in the swing of things!

2009-09-08T07:47:00.000-07:00

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!

2009-08-25T16:42:00.000-07:00

Mya with her physical therapist Vicki!

Climbing up the stairs at therapy!

And she's off!
Mya walking to Vicki for her last therapy appointment!

No more physical therapy!

2009-08-25T16:11:00.000-07:00

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!

2009-08-25T16:10:00.000-07:00

Ready for church!

My crazy kid!!

Pushing her baby in the stroller!

Bath time!

Checking to see if she has any mail!! haha!

Negative!

2009-08-22T15:11:00.001-07:00

Mya's tests from Cincinnati came back negative! She is not allergic to soy, milk, wheat, eggs, or peanuts! Which is great!!! Her emptying scan came back normal also! I think our child is going to remain a mystery and she is just going to slowly but surely get better on her own!!

Sorry it took a couple extra days for me to blog....the day before we left for Cinci my grandmother passed away. We made it home on Thursday just in time for her viewing to start! It has been a crazy few days but she is now resting peacefully in heaven!

We trying a new feeding plan with Mya which knock on wood is going well since we have been home! We have had only one vomiting episode!! I feel like things really are looking up!! Mya now has four teeth and is walking all over the place (sometimes with quite a few falls but she keeps on truckin)!!!

My goal for her was to have her walk into her next physical therapy appointment and we go in a few days! So yay...she accomplished her goal! Thanks again for all the thoughts and prayers!

I will update later this week about how her new feeding plan is going!

2009-08-17T18:23:00.001-07:00

Mya and Reagan playing at the lake home.

The Robert's Family

Enjoying the lake!!

Lake Trip!

2009-08-17T18:20:00.000-07:00

We had a great time this week with the Robert's family at Lake Cumberland! We were in desperate need of some relaxation! We leave tomorrow evening for Cincinnati and will be home on Thursday late afternoon. They are doing a stomach emptying scan and allergy tests on Wednesday and we meet with all the doctors on Thursday morning. Wish us luck!!!! We will finally find out if she has food allergies! They will also be deciding what kind of milk to start her on during these appointments!

Mya's G-tube came out for the first time in the middle of the night this past evening! I was so tired Matt kept trying to wake me up! He just kept saying.....Amanda, Mya's tube came out....Mya's tube came out!!! We actually did pretty well and were able to get the spare in without problems! I was pretty proud of the two of us! We were told over and over to call the hospital if this happened to notify the surgeon so after being on hold for almost an hour we finally got the okay to go ahead and feed her like we normally would and to just keep an extra eye on her belly and G-tube site!

2009-08-12T08:20:00.000-07:00

Picking all of Grandma's pretty flowers!

There she goes!!

Mya and her cousin Emma at Indiana Beach!

Going on a wagon ride!

2009-08-12T07:57:00.001-07:00

Nothing much has changed around here!! Which is always a good thing!! Mya finally has another bottom tooth and a top tooth that has broke through! Thank goodness! I thought she was only going to have one tooth forever! haha!

I would say she is offically walking now! She still crawls some...but is definately walking more than crawling now! She is into everything which Daddy just gets a bang out of!!! She is also saying a ton of words or at least her version of words! Ball, book, balloon, meow, bye-bye, hi, mama, dada, papa, baa, and we have even taught her what a tractor says!!

We have had a few more vomiting episodes within the last few days with the formula which has been discouraging but it's nothing like what it used to be! Thank goodness! We leave next Tuesday night for Cincinnati and will come back late afternoon on Thursday. We will finally find out if she has food allergies for sure and they are repeating her stomach emptying scan. We also meet the doctors to review all her tests results and hopefully get her granulation tissue taken care of. They are also going to decide what kind of milk to start her on based on the allergy tests. (She is still on a non-milk based hypoallergenic formula)

But for this weekend we are heading to Lake Cumberland with some friends to enjoy some relaxation time!! Much needed for the entire family! I'm excited to get away for a few days!

2009-08-05T18:30:00.000-07:00

Mya at one year old!
Mya only a few days old!! What a cute baby!!

19 POUNDS!!!

2009-08-05T15:44:00.000-07:00

WOOHOO!!! She finally made it to 19 pounds!!! Mya had her 12 month appointment today and it went pretty well! She is a healthy, but tiny one year old!

Sometimes when I think about the day she was born it just brings tears to my eyes! For those of you that know the story I'm sure it gives you a good laugh! My husband had several cement trucks coming to the house that day and he had a hard time believing me that I was really in labor 3 weeks before my due date! But being an OB nurse you would have thought he would take my word for it! haha!

We have been cutting back on some of the therapy appointments in Indianapolis. Every week making at least one trip to Indy was wearing me and Mya out! We are starting to go just once per month and have Penny come to our home every 2 weeks! Her physical therapy is also just once per month now! I feel like I have some of my life back! Colleen in Indy is definitely worth the trip and we have sooo much gratitude for all her help. She has really been the driving force for me to get Mya where she is today! She is just a phone call away and seeing her once per month will give us enough time in between appointments to work on the skills we learn!

Mya had a great 1st Birthday party on Sunday! All her little friends were there to help her celebrate as well! We have such a great group of friends and wonderful family members that have been there for us! Hope everyone has a great rest of the week!

A few pictures from Mya's Birthday Party!

2009-08-04T19:24:00.000-07:00

Nothing but good things to say!

2009-08-01T17:13:00.000-07:00

Mya has added a ton of new foods to her diet! We are gradually trying new things. Peas, pears, lunch meat, ravioli, kidney beans, gold fish crackers, macaroni and cheese, toast, and the list goes on! She is doing a great job with eating! She doesn't eat the quantity that a child her age should.....but we are working on it!!

She finger feeds herself, but will also now let me feed her with a fork! She never used to let us feed her with utensils so that is a great improvement.

She has had a couple of vomiting episodes while eating but we are quickly learning what foods she tolerated and what foods she doesn't! I couldn't be more proud of her!!!!

Over the last 2 months Mya has drank about an ounce of milk from her cup 4 different times now! She is very hot and cold with drinking. Some days she will not drink anything and others she will take a few sips with each meal. I have confidence that she WILL drink her entire amount one day!

I feel like things are finally looking up! I know we will have good days and bad days...but for once I feel like the good days are out numbering the bad! We go for her 12 month doctor's appointment this week so hopefully we get some good news on her weight. We went for a weight check about 2 weeks ago and she was still 18lbs. 9oz. (Which was the exact same as when she was 9 months old)

She is not walking yet.....but takes several steps at a time. She has learned how to maneuver through the house walking along the walls, couches, chairs, etc. Life would be so much easier if she would just walk! haha! She is doing really well considering all the trauma she has been through.

We are having her Birthday party tomorrow here in the shop so I will post some pictures afterward! I think we went a little over board....but honestly Matt and I want to celebrate her progress and just be happy for all the love and support all our friends and family have given us!!! Although the last year has been tough we are stronger for it and we couldn't have gotten through it without all our family and friends!!!!

2009-07-29T13:53:00.000-07:00

Happy Birthday Mya!

2009-07-28T03:59:00.000-07:00

Today is Mya's first Birthday!!! The last year has flown by!!! I can't even believe my little baby is now 1!!!! The past week has been great for us! She has been eating really well!!! She even had a couple bites of a McDonald's cheeseburger and french fries!!! Can you believe it!!! Mya is also getting so close to walking it's not even funny! She took 7 steps on Sunday! All the doctors thought she would not even be crawling by a year!

We have a long road ahead of us especially when it comes to drinking but I am starting to hopefully see some light at the end of the tunnel!!! God works in mysterious ways I guess! But he did bless us with the most beautiful 1 year old little girl I know!!!!

Happy Birthday Mya!!!

Negative!

2009-07-22T07:47:00.000-07:00

Mya's biopsies came back NEGATIVE! YAY! So, that kind of rules out a lot of different diseases! Her over night study did show quite a bit of reflux as to be expected. The GI doctor at this point wants to repeat her emptying scan at Cincinnati and see what that says. He wants to get the allergy testing done and possibly start her on a pureed diet through her feeding tube.

The nurse is to call me back this afternoon to let us know when they can do the emptying scan. Hopefully they can do it when we return on August 19th and 20th so we only have to make one trip!

2009-07-19T15:45:00.000-07:00

Giving Daddy a bite!!!

Cincinnati Appointments

2009-07-19T15:17:00.000-07:00

Everything went well in Cincinnati this past week! We will get the results of her biopsies and 24 hour study this next week. Visually everything looked good.....so hopefully we get more good news this next week!

It's kind of a hard position to be in....you don't want there to be something wrong with your child or for them to have a disease.....but yet it is still taking us an hour to do her tube feedings! She is still only taking 4 ounces at a time....so sometimes I think how can't there be something wrong!

We have tried several times to increase the volume, calorie content, or decrease the amount of time and each attempt is not worth all the vomiting. Overall she is doing better, so we have to focus on the positive. She is still sucking milk up a straw and eating table foods.

The GI doctor at Cincinnati mentioned her low muscle tone and how that can affect the inside development as well. Although on the outside she looks great...she even looks a little chubby! That her insides are not developed as well. Without a feeding tube she probably would not even be living at this point. A couple sips of drink and some table food here and there is not enough for her to grown and function.

I will definitely post when we get the results this next week! Thanks to everyone for all their thoughts and prayers!

2009-07-19T15:16:00.000-07:00

Trying to keep the little booger busy while in the hospital!

Appointment

2009-07-13T09:33:00.000-07:00

After just getting back from Colorado yesterday now we are packing for our appointment in Cincinnati. We will leave tomorrow and head to Lafayette for an appointment with her physical therapist. We also have an appointment with Colleen (her feeding therapist) in Indy on the way! Then we will just head to Cincinnati. We have to be at the hospital at 8:30 in the morning on Wednesday and her testing begins at 10:30.

She is having a scope done so she will have to be put to sleep. The probe will be an over night study so we will stay the night in the hospital after her tests are done. She is having biopsies done during the scope but we won't get results until about a week later.

We are scheduled to have allergy testing done with our follow up appointment on August 19th and 20th! So, I will be anxious to see what those tests say!

She is still drinking some out of the straw and eating bites of food. Not a ton at a time...but hopefully we get some answers from our appointments this week!

Exciting News!

2009-07-02T11:14:00.000-07:00

Well...we have some exciting news!!! Mya is drinking out of her straw cup!! Not a ton....but she is drinking!!!! It has been months and months since she actually sucked on something other than her pacifier!! This has just been a few development within the last 5 days!

I was afraid to blog about it honestly...I didn't want to jinx it! She is not consistently drinking, but the simple fact that she is sucking milk up a straw and into her mouth is HUGE for her!!!

I couldn't be more proud of her!!! We are trying all sorts of different soft table foods and she is doing pretty well considering! Bananas, sweet potatoes, pancakes, peaches, pears, and peas are a few new things we have tried recently.

The milk that we actually got her to drink was Vitamin D milk...not the nasty formula she takes through her feeding tube. She actually developed a rash on her chin and arm so the doctor is considering doing allergy testing when we go on July 15th to Cincinnati.

For now we are using Rice Milk for her to drink orally just in case she does have an allergy or sensitivity to milk. (The formula she takes is not milk based by the way).

I am actually leaving next Wednesday to go to one of my college roommates weddings in Colorado for a few days....so this will be the first time I will be away from her and Matt for an extended period of time! I am really excited for a little relaxation and time with the old gag from Ball State! I'm sure Mya will enjoy a few days of bonding with her Daddy and Grandparents!

Thanks again for all those who pray for our little girl! There were times when I wondered if she would ever eat or drink! But everyday I get a renewing feeling that someday she will eat like a normal child her age! Whether that be 6 months or 3 years from now, we are not giving up! She is a little fighter and so are her parents!!!

Happy 4th of July everyone!