How to eat cake

We had a small part for Carter on Saturday. It was wonderful to spend time with friend and family, while celebrating Carter's 1st birthday. We loved having everyone over! Ethan had a blast playing with cousins and friends.

The first taste of cake is exciting for most babies. It is usually more exciting for the parents and we had a blast watching Carter devour his cake. This was the first time we had this type of an experience and it was quite funny. I made the same giant cupcakes that I had made for Ethan's first birthday party. Carter couldn't get enough of it. Had it been warmer, we would have just taken him outside and hosed him down! :)




Hmmm, it looks good


Yep, it tastes good


I love cake!
















His first hot dog






Ethan was a very helpful big brother! ;)


A riding rocket!


Meet Rody, the bouncing horse

We have more pictures and videos that I hope to upload soon. Thank you to everyone who came and celebrated Carter's 1st birthday. You all helped make it such a fun day!

Happy 1st Birthday, Carter!!

My baby turned one today!! I can't believe it. Overall, time has gone by quickly. (Except those first 9 weeks...those went by s l o w l y.) :)

Our little man has such a fun personality. Carter continues to adore Ethan and seeing them play together makes both of us smile. His steps are still wobbly, but he will walk behind anything he can push. Carter still takes two naps and I think he will do that for a little longer. (Considering he is normally rubbing his eyes by 10:30 am, I think he is still enjoying his sleep.) There is no reason to push him out of any nap!

One of his favorite activities is to crawl under our kitchen chairs and up the stairs. By the time I look up, he is normally at the top, smiling widely as if to call out, "come chase me!" He has helped Ethan become more daring and enjoy the rough house play for which boys are well known. Carter squeals with delight when Craig throws him high in the air or hangs him upside down. He has no fear. The rougher, the better.

Only one tooth has poked through his pink gums, yet he loves any table food he can get into his mouth--which is most meals. We love this little man. He has filled our lives with such joy this past year. Happy 1st Birthday darling Carter!



A good morning birthday hug









I plan on getting a picture of Carter every year wearing this necktie


A birthday treat--yogurt for the first time


We went grocery shopping his morning, so Carter took his morning nap on the way home.


I'm 1!!

The next step

I can't believe it has already been a full week of eating orally. How refreshing. What is even better is how it happened. I love that it was done in true Ethan style--breaking all expectations of what and how it should happen. But, most of all, I love that his eating speaks, actually screams, God's provision. It is true that Ethan and I have done a lot of hard work! I won't ignore that and trust me, I recognize it. At the same time, it is clear that God intervened in a major way last week. I love that God has continued to shine His face upon Ethan's life in such intense ways. I have been trying to upload a video of him eating for a few days now. It hasn't worked yet, but I will keep trying.

The next step-and yes, I will put you all to task by praying- is for Ethan to start swallowing table food. While he has good tongue movement now, he still needs to work on holding a piece of food in the proper place in his mouth, chewing it until it is ready to swallow and then swallowing it from the sides of his mouth. (No one swallows chewed food from the middle of their mouth.) Like I said before, the director of the clinic thinks this should take at least 6 months, but I am hoping it will be sooner. Mainly because Ethan wants to do it. I can do a lot of things when it comes to teaching/helping my children. I can hold up Carter as he walks, help Ethan catch a ball and show Ethan how to move his tongue/lips. But I can't swallow for him.

It will be a busy week for me this week as finals are due and I will be grading government finals over the next few days (they are 6 pages long). I am getting over a bad head cold and I am also getting ready for Carter to turn 1! Yikes! He is almost 1! :)


I didn't realize Carter could get up on the stool and grab items from the counter. Good to know!

More, mama

We are thrilled at Ethan's progress! He as been doing amazingly well and has not turned back! No g-tube use for him during the day. I love that he is proud of his new accomplishments. He has done a great job of telling me that he wants to eat and also telling me if he doesn't like a particular food.

We went down for a eating appointments yesterday. While we didn't end of having a regular session (his therapist was sick) we did meet with the director and the dietitian. Both were beyond shocked to hear that Ethan has been eating orally and has not needed ANY tube feedings during the day. In fact, the director (the one with 25+ years of experience who travels the world speaking and training people about feeding issues) said that she has never seen something like this before! She has never seen a child go from basically no or very little oral consumption to full oral consumption overnight! She really didn't know what to say except the fact that she is floored. She is also shocked that Ethan gets so excited about eating and has been trying a wide variety of purees. The "expectation" is that Ethan will spend another 6 months on purees until he moves to other table food. I didn't say anything to that, but my mind was thinking, "yeah right! you are talking about the child who just blew your socks off with eating overnight!" Not to be rude at all, but Ethan has never done anything the way everyone thinks he should.

The director then shared with me that when she first met Ethan, she didn't know if he would ever eat orally. While she figured they would be able to help him, she was nervous because his oral/tongue ability was so poor. I mentioned to her that I have a blog and about my request for prayer in regards to swallowing. She said that the power of prayer is amazing and I could not have agreed more! So, from here, we just keep going!

The dietitian was happy to report that all of his nutritional needs are being met via oral consumption of food. I keep a detailed food diary for Ethan so that I know if he is meeting the daily intake needs of calories, etc. We are keeping his one night feeding for now because I feel that he needs to gain a little weight before we take that away. Plus, that is where he gets most of his liquid right now. But, it may not be much longer before we take that away! And, speaking of weight, Ethan gained over a pound in five days!! WOW!

Ethan does a very good job of telling me "more, mama" when he wants more food. He also is great at telling me which food he would like to eat. Right now he has one favorite and while they recommend that he only get the same food once every 48 hours, I would rather see him perfect his skill before I hold off on certain food.

No tube use!

We have not used Ethan's g-tube during the day for two days! (He still gets one bolus feeding at night.) Yesterday morning I went into his room when he woke up. I asked him if he wanted to eat some food using his mouth so that he could swallow down to his tummy. He stood up on his bed, cheered "yes!" and started jumping up and down. Every time he wants to eat he gets SO excited! It is an amazing transformation. He ate 42 ounces yesterday and 49 ounces today. In fact, last night he wasn't falling asleep so I went up to see if there was a problem. He signed that he wanted to eat and proceeded to eat 11.5 ounces before he went back to bed.

It was been such a wonderful few days! I can't wait until Wednesday when we go back down to eating therapy. We have been surprised that Ethan has been enjoying sweet tasting purees as these used to cause a major gag/vomit. Another amazing thing is that since he had the stomach flu, we haven't given him any Prevacid (since we figured he would just vomit anyway) and he hasn't had any problem not have this medication. No vomiting at all. Yay! He feels heavier, too. He has been eating more via mouth than he used to get via g-tube in a day. Ethan has finally made the association between hunger, food and eating.

Tonight I had to run to the store because I had run out of purees for Ethan. We don't normally go through so many so quickly! I didn't mind at all!



Ethan was waiting for Craig to come home because he wanted to try a new puree. (He didn't like that particular one, but that is ok--he was still willing to eat something else.)

Pinch me

25 ounces. Say it with me, 25 OUNCES! That is what Ethan ate today!!! I think I am still in disbelief!

I normally never do any eating therapy during breakfast because it was the one time of day that Ethan tended to get the most frustrated. I think it was because he was so hungry first thing in the morning and didn't know how to eat successfully. But, considering how well he did yesterday, I thought I would offer him breakfast orally. He was hooked! He ate 6 oz of baby food before he told me he was "all done." Hardly any food came back out of his mouth and he was enjoying his breakfast.

And so, for lunch, I offered him food again. I didn't have the food he had yesterday so I tried a new one. It was quite chunky and difficult for him. After 2 ounces he was done. I did have to supplement what he ate with a g-tube feeding, but still, he ate some lunch.

I thought maybe that was all he would have today. However, after his nap he ate 4 ounces of yogurt and 5 ounces of the same chunky baby food from yesterday. He was thrilled to be eating!! And I was thrilled that he was doing so amazingly well!! At that point, it was later in the afternoon and I truly figured he wouldn't want any more food.

We went out for a bite to eat and I figured Ethan would just want to "snack" on some french fries. Well, I was wrong! I started feeding Carter and after seeing him take one bite, Ethan said, "more." I gave Ethan a bite and he continued to eat 4 more ounces! Then, he told me "more" again. Luckily, I had more food in the diaper bag. (Plus, poor Carter needed to eat, too!!) But, I had enough for both and Ethan ate another 4 ounces. Again, most of the food was consumed and very little came back out of his mouth. It was as though he had always been eating.

That means that by the end of the day, we only used the g-tube for one measly 4 ounce feeding!!! (We will still need to use it at night to supplement his calorie intake while he is sleeping.) What an answer to prayer! The Lord has been so generous to give us these blessings. I am beyond moved by His provisions. We are exceedingly grateful. It was more progress than I ever thought we would see in such a short amount of time. I can't tell you how amazing it was to hardly use his g-tube today. Praise the Lord!


This is the chunky food he has had the past couple of days. Anything chunkier than this would be difficult for Ethan to handle at this time.


At dinner tonight, he wanted to try some corn.

New Pump

We received Ethan's new pump yesterday. I tried to blog about it, but apparently Blogger has been down since Wednesday evening. I am currently having trouble uploading video, etc., and it seems that some comments have been erased by Blogger as well. Hopefully all will be fixed soon.

The new pump is quite different than the old, but I think it is much better. While we haven't tried a thicker formula quite yet, we will soon. (I meet with the nutritionist from the feeding center next week to work out a high calorie homemade formula.)

The other amazing news is what Ethan has been doing these past two days. Yesterday he asked for something to eat. I was about to blenderize one of the high calorie foods, but he requested a bite. I was shocked when he continued to eat about 4 oz. While he has had 4 oz of sweet potatoes, much of it would come back out as he was trying to swallow it. Plus, sweet potatoes are very smooth and don't have challenging chunks in them. However, the food he had yesterday is extremely chunky. I figured he would spit it back out. Like I said, I was shocked when he swallowed all 4 oz with very little coming back out. He kept asking for more. Any time you add texture to something, it is normally hard for kids like Ethan to adjust. We were so excited! His swallowing has improved drastically!

I was looking forward to his feeding appointment today since he did so well yesterday. I brought the same pouch of food down so that Ethan could show his feeding therapist how well he was doing. I thought I was going to have to pick her jaw from off the ground. She could not believe her eyes! She asked where Ethan went and who this new child was...one who could correctly take the food off of the spoon, close his lips and swallow without it being pushed back out. Not only was she impressed that he accepted a new texture/food so easily and quickly, but she was more impressed with his mechanics. While there, he also chewed and swallowed a couple (maybe 3) Kix cereal pieces and a few small bites of pancake. She is genuinely shocked and impressed with his sudden progress.

We worked a lot on taking small bites, chewing and then "checking" if the food was ready to be swallowed. That meant that we all took bites, chewed, spit them out and examined the stage of the food. (I know, it is really gross--it gets worse.) Then, we would talk about whether the food was ready to be swallowed or not. If it was ready, we would put it back in our mouths and swallow. If not, we would put it back in our mouths; chew some more, spit it out and then repeat the process. Yeah, not too pretty! But, it seemed to work. And, I discovered that the reason Ethan shoves so much food into his mouth is because by doing so, it helps push food into the correct place (back molars) where he can chew it. (Fascinating, huh?!)

All of that led to the drum roll moment of my day. After his nap, Ethan wanted a snack and brought me the same food he had the day before. This time, he ate the ENTIRE 5.5 oz pouch and then asked me for more. He continued to consume most of the second pouch of food. (I was feeding him with a toddler size spoon---yep, he has also moved up in spoon size!) That means he probably ate around 10 oz of chunky organic baby food in an appropriate time span!! It was such an exciting time for me. He seemed to get it. Plus, all of this swallowing, especially with small chunks, is terrific for him to continue to learn. I don't think I can express how delighted we are with this sudden change.

I can't thank you all enough for your prayers. I love that I can share that the true reason Ethan has made sudden and drastic improvement is because of God's provision. Thank you from the depth of our hearts! We still have a lot of work to go, but we know that God is faithful and hears the prayers of His children.




The old "Joey" pump


The new pump






Yummm, pasta

Prayer works

WOW, that was fast! :) Praise God! The new pump will be here tomorrow!

This has been a long battle. I don't know why the company had dug their heels in the ground on this one, but I have been so frustrated. My frustration peaked yesterday. I had called last Friday and asked the status of the new pump. I was told that their dietitians were still "reviewing" the case. That didn't sit well with me because I knew that our pediatrician had asked that Ethan have this particular pump. To me, that is enough information to allow the pump to be authorized. I was told I would receive a phone call back on Monday. I never did. So, I called Tuesday and explained everything. I was told the same thing...that I would have a phone call back by the end of the day. Nope, no phone call. Therefore, when I called this morning, I had to use that voice. (I can honestly say it wasn't a rude or nasty voice, just my "I am determined" voice.) I was told that the dietitians were waiting on a signature from a doctor I didn't know. I asked where the doctor was located thinking that I would call her office. They didn't know. The lady said she would call me back. (I wasn't holding my breath.)

I decided to take the name she gave me and google it--yep, the internet can be pretty handy! Turns out the doctor was from TCH. Then, I emailed our pediatrician asking what I could do to get the other doc to just sign the piece of paper so that we could get this pump. He, being the truly awesome doctor that he is, said that he would handle it tomorrow when he was there (in clinic). I thanked him and was happy that maybe I was getting somewhere. (He is a pretty amazing doctor and we really appreciate everything he does for us!)

As soon as I clicked SEND on my email, the phone rang.

Cue Hallelujah chorus.

It was the company telling me that the new pump would be here tomorrow, along with a tech to train me on how to use it!!! I could not believe what I was hearing. I have no clue how it all worked out. No clue expect to say that God does listen to all prayers and cares about the big and little ones. It was a reminder to me not to wait to pray about something. Here I have been, the past two months, waiting for this to work out. I should have brought it to prayer right away. That doesn't mean that we would have received the pump right then, but it is what God asks us to do. Come to Him with whatever we need.

Swallow

When our children feel better, moms can see it in their eyes, feel it in their touch and hear it in their voice. Ethan is back to normal. Yay! I could tell when he woke up this morning that it was going to be a good day.

One of the things that we have noticed lately is Ethan's frustration with not swallowing. It was quite noticeable this past Sunday when we went out to dinner for Mother's Day. Granted he still wasn't feeling great, but it was beyond that. He would stuff his mouth full of food, chew and then get upset when he spit it out. It seems like he has truly made the connection to what he is supposed to do, but is frustrated that he can't do it. (It doesn't help that he will stuff his mouth to the point that he has chipmunk cheeks!) He has the ability to swallow and has swallowed some purees, liquid and a tiny piece of food here and there. But, I have never seen him so frustrated before. I am proud that he can stuff his mouth and not gag, which show obvious signs of improvement. In fact, he will stuff his mouth and then say or sign "more" even when there clearly isn't any room for more food.

That same day, when we took the boys to the car, Ethan happened to look up and I noticed he had something stuck in his mouth. His hard palette has a substantial grove in it from being intubated for so long as an infant. This will never change. I realized that he had bread stuck up in the groove because he doesn't quite have the tongue ability to remove it. While it wasn't pretty, I was proud that he let me remove it from his mouth. Things like these are big steps because a few months ago there is no way he would let me put my finger in his mouth. (Oh, what moms do!) He would have cried and vomited.

Seeing Ethan's frustration, I have a request for those of you who read about our boys. I know many of you (if not all) have been such prayer warriors for Ethan. We can never thank you enough for continuing to lift him up in prayer. I have often been reminded that God wants to hear our prayers for both the big things (open heart surgery) down to the smaller things, like swallowing. Because God wants to hear it all. And, so, would you please keep two things in mind when you pray for Ethan? First, that he would begin to actively swallow and second, that we would receive the new feeding pump that would be most effective for Ethan. Thank you. :)


My little man bringing me flowers for Mother's Day


We went to the park and Carter could not get enough of the swing.




This was the first true smile we saw in quite a few days.








I was trying to get a picture of Carter's tooth...if you look real close, you can see it.


An interesting spot to read....


Carter could stand and watch Maverick for hours.

Real quick

I wanted to give a quick update on how Ethan is doing. He seems to be doing better overall. Things are still not back to normal, but we are getting there. We are having trouble with our feeding pump and I need to call the company again tomorrow. I just wish they would grant us a feeding pump that would better facilitate the type of food mixture Ethan needs to aid in his growth.

Early steps

For the first time since early Tuesday morning, Ethan has keep something in him for more than a hour. (He has been keeping things down, but not in.) Hopefully that will help firm things up a little. Both boys enjoyed a little time outside...fresh air heals, right?!


This is from the other night when he seemed to be doing just fine. He wanted to try some spaghetti.






The wagon is a favorite in our house.


When we got back from the walk, Ethan got down to work.



Early steps!