Sunday, January 31, 2010

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!

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!

Friday, January 29, 2010

Day 10 of Therapy

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!

Thursday, January 28, 2010

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

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!!!

Wednesday, January 27, 2010

Day 8 of Therapy 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!

Tuesday, January 26, 2010

Day 7 of Therapy

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!

Monday, January 25, 2010

Day 6 of Therapy

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!

Sunday, January 24, 2010

Fun at the Children's Museum!

Friday, January 22, 2010

Day 5 of Therapy

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!
Walking to therapy! The sun finally came out today!

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

Crazy kid!!!

Thursday, January 21, 2010

Day 4 of Therapy

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 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!

Wednesday, January 20, 2010

Day 3 of Therapy

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!!!

Tuesday, January 19, 2010

Day 2 of Therapy

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 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!

Monday, January 18, 2010

Playing at the clinic! Our first day at therapy!

Day 1 of Therapy

Mya did great for her first day at therapy with Ben. It was actually a lot harder than what I anticipated it would be. Don't get me wrong, Mya left each feeding smiling and playing and her happy go lucky self. But it was an exhausting day for Mya and the two of us. We did three feedings with Ben today and that was plenty! Mya was wore out! We are still adjusting to the time change and were up again at 4:00 a.m. this morning California time!

Mya's feedings each got better as the day went on, but there was a lot of crying, gagging, vomiting, and refusing. I am so happy that we are here, but wish we would have done this sooner. The older she gets the harder this is going to be. I think Matt and I are coming to terms that Mya's feeding disorder is actually worse than what we thought. She only ate 360 calories of food today and in reality needs well over 1000. She spit a lot of the food out so one bite would take him 5-10 times to try to get her to swallow. She would pack the food in her cheeks or simply just sit there with the food in her mouth not wanting to swallow. Ben is very positive with her and does not use force what so ever. We have a long way to go but for Day 1 she did great!

By the last feed she was actually opening her mouth for the spoon (in not to good of a mood about it but was opening her mouth). At this point until she progresses Ben does the feedings with Mya and Matt & I are in a completely separate room watching everything on a TV. Although it is hard to watch I know that we are doing the right thing.

Ben is a very down to earth kind of guy and as a father of 3 he knows what it is like to have your little baby go through tough times! We talked a lot today about her history and our health care here in the U.S. Basically these parents are sent home with a "quick fix" feeding tube and end up with a complete mess when their children get hooked on them and develop oral aversions.

Overall day 1 was a success but I have to admit I hope the ride gets easier! Thank goodness Matt is here with me!!! Keep praying for Mya!!! I know she can do this!!!

Sunday, January 17, 2010

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!

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!

Saturday, January 16, 2010

At the airport!

We are here!!!

We got to California safely today! We are getting things settled in our room and getting familiar with the area. So far so good! Both legs of the flight went well....Mya actually slept from Denver to the San Jose airport so both Matt and I were able to take a little nap!

We are really excited to get things started on Monday morning but of course have a ton of different emotions going on at the same time! Mya threw up just as we were leaving for the airport this morning and I thought to myself....maybe just maybe that would be the last time she would have to vomit without truely having the flu!

She was such a trooper today and I couldn't be more proud of her! We are planning to take it easy tomorrow since we have a big week ahead of us! We are 3 hours behind here in California so that will take some adjusting to. (It's only 5:45 here and Mya is already asleep!)

We have recieved so many emails, cards, phone calls, visits, and fb messages!!!! We are so thankful that we have so many friends and family members that are behind us!!! Thank you everyone!!!