OCH week 4

We are cruising along here at OCH. This is Preston's 4th week. It looks like we will be staying through next week - which is a good thing!! He had some more vomiting issues (not sure if you non-face booker knew about the vomiting, but it started got a littlle better and then at the end of the week and over the weekend it got REALLY bad due to his delayed stomach emptying. It seems to be resolved for the moment by uping one of his meds and by limiting the volume of his meals and taking out his morning snack.

We (mostly me, or my mom, or randy or randy's mom) are now staying all day here and I am now doing the feedings. So far so good! It has been a lot easier this time, since their way of doing things is what we have been doing at home for over a year now. The days are long, but he seems so much happier now that one of us is with him all day. They are still working on his chewing in speech therapy and getting us set up for outpatient therapy after he is discharged, as well as a home plan. If your are bored - we love visitors, between the hours of 3 -5 (that is honestly the worst, slowest part of the day, and 5:30 to 8 (I'm mostly here during the week and Randy does weekends - but we are both up here at night so the boys can play together).

Preston is really being a trouper and has been babbling a lot today - which just melts your heart!! He was sitting on the playground this evening with a cup and a stick and putting the stick in his mouth - which is something he never does. And I thought I heard him saying something and I got down next to him and he was saying "good bites." That is the verbal reward he is given after he "takes his bite." He was taking the stick out of the cup and basically poking it in his mouth and doing it over and over and saying "good bites" and sometimes clapping for himself. It was the most precious thing!! It made me cry. He was just poking the stick in his mouth, but it was great to see him imitating his meal protocols and I really feel like he WANTS to learn how to chew things. So I think desire to learn to chew could be half the battle in my mind!

This was taken on Mother's Day - how can you not love that sweet smile!!

Even though we had first hoped (months ago before being given realistic expectations) to be stopping by McDonald's on our way out of here it is pretty clear we won't be leaving with him even eating anything disolvable. But he is very slowly overcoming his fears and aversions to things in his mouth, so we are feeling glimmers of hope that with a lot of hard work Preston will one day be eating a cheeseburger. Thanks again for the prayers, support and encouragement! They all mean so much to us!!

Sippy cup success!! :-)

Ok I am finally getting to an update - sorry for the delay. Preston settled in pretty quickly and once he got the routine down he seemed a lot happier when we came back for the evening. We have brought Luke up every night to play with him and they have both really enjoyed it. They play on the playground and really love to show off their sliding skills when Grandma, Nannie or Grandpa visit. We have also made friends with some of the other feeding patients kids and their Moms so we all have our playtime in the afternoon to get the kids outside and some in the fresh air.

Preston is slowly staring to drink out of a sippy cup. They have been gradually replacing his bottle with a sippy cup in his meals and he is doing better and better with it. He is drinking out of a sippy cup 3 of his 5 meals and is usually getting between 2 & 3 oz each time. So we are really happy with that!! They let us give him a bottle when we get here after his 5 o'clock feed to "top him off" and we also give him a bottle before bedtime, so that has put us out of any NG tube talk lately. As long as he continues to do okay during the day (as long as he doesn't just hold out for a bottle in the evening) they are going to let us continue with those bottles and a NG tube should stay off the table.

On Friday and Saturday he did start having some issues with vomiting, but we feel like that was due to his delayed gastric emptying. His feeding schedule is a lot closer together than at home and more of his food is pureed table food than it used to be so that is definitely slowing his down his already slow digestion. So they have decided to back down on the amount some they give him in the middle of the day and by Sunday he didn't have any issues and we haven't since. We definitely don't want him to get into any patterns of vomiting again. That's no fun for all parties involved!!

We had a conference today with his team here and we didn't exactly come to an agreement as to where we are headed yet. They don't think he will go home eating any type of puff or soft dissolvable because they feel he has a such severe oral aversion to chewing, that it will take a long time to work through. They wanted me to start sitting in on his feedings this Monday, which means we are on our way out the door, because once the parent starts to sit in they really don't start working on any new skills past that point. So we sorta stood our ground and basically told them we want to be here as long as possible - as long as our insurance will allow to maximize this stay - and that so far him eating completely smooth pureed food is actually less than he was doing at home. We had been working on pureed foods with some chunks of pasta, veggies or fruit in it at home.

They agreed to address that tomorrow and basically come up with a new plan. As far as we have been told by the insurance coordinator here this inpatient stay is a one time thing as long as we are with the same insurance carrier. So we expressed our concerns about that and basically told them that we don't want to waste this and that we really wanted to be aggressive with his therapy and to push him. We shall see what they come up with tomorrow!!

Randy stayed with Preston on Friday and Saturday night, so I had a chance to catch up on my sleep. Him and one other Dad are the only one's who trade off with the moms. I am so thankful that Randy does this!! He is a great sleeper and he said he slept ok on his nights, but that he did toss and turn some. One of the other Mom's and I are convinced they have a party in the hallway during the 4am hour. We both can not sleep during that hour and literally wake up 5 min after we fall asleep. Not quite sure what the nurses do at 4am, but I am going to find out. Preston has been sleeping pretty restlessly too and waking up some in the night. But he woke up this morning in a great mood, so I think he is getting used to it. I did get some ear plugs on Monday night and they have actually helped a lot. I have slept a lot better since I got them - only woke up once during the 4 o'clock hour last night. ;-)

I have to give a shout out to my Junior League - Scottish Rite girls - and say a BIG THANK YOU!!! My junior league placement is Texas Scottish Rite Children's Hospital and we do craft nights for the inpatient kids there. I have not been able to go much since January and my sweet Junior League friends surprised me last night and brought me a super cute goodie bag filled with all sorts of great stuff. They even got me a gift card for a manicure and pedicure. I was so shocked when I saw Angela's face here last night and it totally made my night. Randy, Luke and Ashley had just left and just seeing a friend for a little surprise visit was just what I needed!! Thank you girls so much!! That was so incredibly thoughtful!! Preston had a great time laying in my bed digging through it before bed tonight - see the picture below. (Notice the cute quilt on the bed - Ashley found that for me ;-) Trying to make the room feel less like a hospital - and Randy really loves the floral accents - haha!!)


Preston has one of the most severe oral aversion when compared to the other children in the inpatient floor right now, but over the past year he has been gaining weight pretty well (on his mostly liquid diet) and he is not at such a dangerously low weight like most of the other kids here. So once again, we are reminded that it can always be worse and to thank God for his decent, stable weight and ability to maintain it mostly on formula.

Ashley and I were texting last night. We both just had a huge confirmation of something we tell my parents often, but probably not as often as we should. We both said how we feel so blessed to have been born to such wonderful parents. Parents who taught us how to live, love and be caring adults. Mom and Dad, thank you so much for setting the bar high and always telling us we were smart enough and great enough to do what ever we wanted with our lives. I know people can sometimes pull themselves up out of terrible childhoods, but wow - but from some things I have seen lately it seems to me to be a sad cycle that is so hard to break!

Ok - I have to try and sleep. I just had a little interruption. It's 1am and Preston woke up vomiting, which hasn't happened in a long, I mean long time. I think it's because within the last 4 hours he has started to get congested and has started to cough a little. I just talked to the nurse and she is going to get orders in the morning to start his neubulizer steroid and bronchodilator treatments. Those are directions per his pulmonologist, if he starts to get a cough or congestion, and maybe that will keep him for getting too congested or something. Hopefully he can blow through this cold quickly without any more issues like just now. I'll keep ya posted on this latest little development.

Thanks again for all the prayers, sweet cards and words of encouragement! We are honestly doing pretty good with our new little routine right now. The boys had a fun bath tonight and Preston taught Luke a new thing - how to recline in the bathtub and chill!! It was really adorable!!! Have a great rest of the week! Oh and it is officially May 6th - so Happy Anniversary, Randy!! I wish we were on a beach in Mexico!!!!!!!! ;-) Love - J