Frederick Clan

As many of you who have been following Chloe’s story know, she stopped eating and drinking after her lip surgery and is being fed through a g-tube. Since that time, we have been working with her, along with feeding therapists, to help her overcome her eating issues.  Well, recently, she started drinking out of one of her tippy cups! Here is a picture Carolyn took from her phone:

It seems so funny to say, “yay- my daughter drank water,” but it’s a huge step for her. Today, Carolyn took Chloe to her regularly scheduled appointment with a feeding therapist and she not only drank water, but also some milk. In addition, she licked a lollipop! We’re grateful she’s making some good progress.

There is a good chance that she’ll have similar difficulties once the palate surgery is done, which is potentially going to happen in September. But, we’ll worry about that when the time comes!

It’s been way too long since I posted an update here… For anyone following Chloe’s progress, my apologies! Overall, Chloe has been doing very well. Unfortunately, she’s still not eating, although we are working with feeding therapists and trying just about everything you can think of. But, her lip has healed up quite well and she’s changed significantly since she first joined our family in China.

When she’s not upset about getting her diaper changed, getting dressed, etc, she spends a lot of her day quite happy and enjoys all of the attention she is now getting. She smiles a lot and loves to play with all of us. She particularly enjoys playing what I’ll call a mini version of hide-n-seek. It’s difficult to describe the transformation in words, but she is so different from the little girl who was almost completely trapped in her own little world.

Obviously, Chloe’s special needs have significantly altered our life. For one thing, she has to be fed four times per day – and each feeding takes an hour. Thankfully the pump we have is portable, so that allows for some flexibility. There are also numerous appointments with various doctors, therapists, etc, not to mention trying to keep up with all of the details of various providers, health insurance, OC regional center, etc. I know many of you can relate to some or all of this! Despite the challenges, we are so thankful to God for His provision and for the excellent medical care that Chloe is able to receive.

And, I wouldn’t change any of it. We can’t imagine life without this unique and precious 2-year old. She’s an awesome kid and I’m looking forward to seeing all that God has in store for her. Hopefully we won’t mess her up too badly!

Most likely, in either August or September, Chloe will have her palate surgery. We were originally thinking a little later in the year, but the surgeon and other doctors feel that since she already has a g-tube in place, we might as well get it done. There is a good chance the palate surgery will be a set back in terms of feeding therapy, so the longer we wait on that surgery, the longer she’ll need the g-tube most likely. And, while we are thankful to have a way for her to get the food she needs, particularly since she was so small when we adopted her, we want to get rid of that g-tube as soon as we can! So, at this point, we are going to pursue an August or September timeline.

Megan has been doing well overall and is enjoying summer. It’s sometimes difficult for her, as we sometimes have to give extra attention to Chloe that is above and beyond what would be typical. But, we’re doing what we can to make her feel loved and special.

We are grateful for family and friends who have been so supportive and have prayed for us. Please continue! I’ll provide some more updates soon, particularly once we have a date set for her next surgery.

Chloe came home from her second hospital stay tonight! Yesterday (Wednesday), she had a procedure to install a G-tube. The procedure was a success and Chloe seems to have recovered fairly quickly. She’s had two feedings through the tube so far and Carolyn told me that she enjoyed exploring her home again once she got there. They also took out the PICC line, which is one less thing we need to worry about at home.

Most likely, we will leave the G-tube in place until sometime after the surgery to repair her cleft palate. Even if feeding therapy is a success and she starts eating through her mouth, there is a chance she’ll stop eating again once the second surgery takes place. This will avoid having to go through the process of installing a NG or G tube again.

We are thankful she is now home, and hopefully we will have the opportunity to get settled into what I am calling our, “new normal.” Chloe is going to require a lot of medical and therapy appointments on-going, so that’s going to mean a lot of time out, a lot of information to keep track of, and likely other adjustments to our day-to-day life. As a home nurse told us, just keeping track of everything is a part-time job in and of itself.

One encouraging development is that Chloe has started to put toys in her mouth again. She still has a long way to go to developing eating and drinking patterns that a child her age should have, but at least she seems to be feeling a little more comfortable with her lips and mouth.

We are grateful for all of the people the Lord has brought into our lives… for family and friends who have helped us, particularly Carolyn’s parents, for our connections with other families who have gone through or are going through similar experiences to ours, and for those who are praying for us. Please continue to pray for little Chloe. Thank you!

I just realized that I had posted some updates on Facebook, but neglected to update our blog! Chloe was discharged from the hospital on Thursday night, 6/16. That evening, a bunch of supplies were delivered to the house to enable us to feed her through the NG tube (i.e. a feeding tube that goes in through the nose to her stomach). A home nurse came the next day to show us how to use all of the new stuff.

The nurse discovered that the hospital had not ordered any supplies for us to manage the PICC line. So, she had those supplies ordered to us and later that day, they were delivered. Our home started to feel a little bit like a hospital or clinic! Carolyn took the girls out to Target to shop and bought a cart to help keep all of the medical supplies organized.

Before each feeding, we continue to offer her a bottle as we obviously want her to eat through her mouth rather than through the feeding tube, but she refuses each time. We will continue to go to feeding therapy to help her work through this. We’re also talking about just using tippy cups instead of bottles, as they do not want her on the bottle for her palate surgery. We’ll be talking more with the feeding therapist about that.

Other than that, she has been doing quite well. Of course, the feeding creates scheduling difficulties. It takes an hour for each feeding, and those are four times per day. The pump and bag is portable; however, it’s more complicated to set this up. We’re trying to learn how to work around all of this.

Today, we went to spend time at a fairly large family gathering, including a number of family members here from out-of-town. While we were there, Chloe pulled out her feeding tube. We were told that if she does this, particularly if it is a weekend and most regular medical offices are closed, that we needed to go to the ER. So, Carolyn and I left Megan with Grandma and Papa, took Chloe home briefly while we packed up a few things (we went ahead and assumed Carolyn would be with her all night at the hospital), and headed to the ER.

At the ER, Chloe was actually in good spirits. She wasn’t hungry yet, even though she was way overdue for her next feeding. She was smiling a lot – almost as though she was pleased with herself for figuring out how to get that irritating tube pulled out! Unfortunately, she had little clue as to what would come next. We met with one of the doctors and he consulted the GI doctor who helped with Chloe during the previous hospital stay. The plan the GI doctor wanted to follow is if the NG tube was damaged or pulled out, that a G-tube would be installed.

That plan was confirmed, and Chloe was admitted to the hospital. Carolyn is staying overnight with her, while I stay home with Megan. Tomorrow afternoon, I will switch places with Carolyn so that she can take Megan to a dress rehearsal for her upcoming dance recital. We’re hoping that the G-tube can be installed on Monday; however, there may be scheduling difficulties with that. In theory, once that has been done and she’s recovered from that procedure, she’ll be able to go home again.

Anyway, please pray that the G-tube installation can be done in a timely manner and that the process goes well. Of course, ultimately we hope it won’t be needed for too long; we’re really hoping for some good progress on the oral issues that she has. Thank you!

I’m sitting here in the hospital next to Chloe using an aircard I just purchased through T-Mobile. Given Chloe’s situation and on-going need for care, I decided I really needed the ability to work almost anywhere. I’m not getting 4G speeds while in the hospital, but even on 3G, it is working quite well. Connecting to systems that I work on over the VPN… Ummm, what? Did you say something?? Oh, you aren’t interested in all of my technical jabber and you want me to talk about who? Chloe?? Oh yeah, my daughter! Ok, ok… moving on…

Chloe overall had a good night. She did have one episode where she suddenly woke up and seemed to not remember where she was at and why she had all of the tubes sticking out. She totally freaked. I had to hold her pretty tight to keep her from damaging anything. She eventually calmed down and went back to sleep.

Of course, sleeping at the hospital isn’t really the same as sleeping at home. Yeah, I know, that’s pretty obvious I suppose. Interestingly, what woke me up the most wasn’t Chloe waking up – it was the IV machine beeping. Chloe rolled around a bit, and sometimes rolled on a line. Well, the device starts beeping loudly and I have to call the nurse to fix. Thankfully in most cases, she had already rolled off of it and we didn’t have to disturb her. But, I can’t even count the number of times that happened. I think the invention of an IV machine that automatically notifies the nurse station when such an event occurs would be wonderful. (My guess is that probably exists in some hospitals.)

Anyway, it looks like the little girl is waking up. Her lip is looking very good and seems to be healing up nicely. And, now that she’s eating – even though it is through a tube – she seems to be getting back to normal. In fact, they are starting to lower the IV amount since she is getting nuitrition through the food they are starting to give her. At some point soon, I expect the feeding therapist to come in and we’ll continue to work with her. Maybe we’ll make some more progress now that she’s in a better state of mind.

Ok, all for now – thank you for praying!

After dropping Megan off at school this morning, I headed over to the hospital. Chloe’s procedure to install the PICC line and feeding tube was about to begin. In order to do the procedure, they had to sedate her. It was a little weird seeing her glossy eyed before we said goodbye for about an hour.

We were able to go to her room after the procedure. She had already started waking up by the time we got there. Once they could confirm that the PICC line looked good, they would be able to take the IV out of her hand!

At close to 12pm, I left to go get some work done. When I came back to the hospital early evening, I discovered that they needed to move the PICC line up a bit. This meant three nurses (with me helping as well) holding her down. They had to get the sticky tape stuff off, gently move the line up a bit, all while trying to contain a very unhappy little girl. Thankfully it didn’t last too long, although it felt like forever. At the same time, they removed the IV from her hand – yay!

While I was working at home in the afternoon, Carolyn told me that they did the first feeding through her new feeding tube. While we ultimately hope she will soon learn how to eat through her mouth, it was exciting to hear that the feeding perked her up quite a bit. She was starting to act like the old Chloe! Also, there is a good chance that we’ll be able to take her home and feed her through the tube ourselves. Our hope is that she’ll thrive more after getting home and perhaps better respond to feeding therapy.

I’m actually spending the night at the hospital tonight instead of Carolyn. This will allow Carolyn to get up with Megan and go to her kindergarten graduation. Chloe actually stayed up quite late, and while she did spend a little time crying, she calmed down and we had a nice time playing. I got a lot of good laughs and smiles from her, which I hadn’t seen since the surgery. (I had seen a few isolated laughs and smiles, but nothing like what I saw tonight.) So, even though I’m not pleased that we ended up having to get the PICC line and feeding tube installed, it seems like it will ultimately help her progress and heal.

I’d better stop typing and get some sleep… it’s hard to say how long the peace will last!

First, the good news… Chloe’s lip is healing up nicely. We are grateful for that. Unfortunately, Chloe is still not eating and seems generally depressed. I guess given she cannot eat, lacks the use of one hand due to the IV, has to have ointment applied to her lips every 3 hours, and cannot be at her home which she was growing comfortable with – it’s completely understandable! On top of that, if she gets too upset, she ends up messing up the IV and then they have to reinstall it – which is a major nightmare.

Wednesday morning, she will undergo a procedure to install a PICC line, which will eliminate the need for the IV in her hand. We’re hoping the shift from her hand to upper arm will be helpful. While she is sedated for that, they will install a feeding tube from her nose to stomach. We’ll continue feeding therapy, but this will provide an alternate way to get some nutrition in her for now. We also want to see how she responds to this type of tube – if it really irritates her, they may have to switch to a gastric feeding tube.

Of course, none of this is meant to imply difficulties with her care… We have had very helpful doctors, nurses, and therapists. We have nothing but respect and appreciation for all that they are trying to do to help Chloe.

As many of you know, today was my birthday. I had been telling Megan for a long time that I would take her to ride the newly revamped Star Tours ride at Disneyland on my birthday. That’s our favorite ride and it is kind of a special one to us, as I was the one who encouraged her to ride on it when she was fearful of going on. When she went on the first time, she almost bolted just as we got on. I gently told her that I wasn’t going to make her ride it, but that I thought she would really enjoy it. She trusted me, and as it turned out, she ended up loving it.

Back to the present… Carolyn and I decided it would be good to keep that daddy / daughter birthday date – this whole thing with Chloe affects Megan big time and we want her to know without a doubt that she’s not forgotten in all of this. So we made it happen. It was a bit muggy and very crowded, but we ended up going on the ride and had a great time.

We then made a quick trip home, then went to the hospital. Grandma, Megan, and I hung out with Chloe while Carolyn got a break. I did spend a few minutes playing with a green sippy cup. I put a little water in it and just played with her – nothing forced. She saw how I put it in my mouth and drank water. In fact, as she did yesterday, she then proceeded to help put it up to my mouth. Then, she played with it and we even got it to touch her lower lip without her freaking out. (That’s actually a pretty big deal given her current state.) But, didn’t get far enough for her to take a drink – although I could tell a part of her wanted to. When she was done with it, I set the cup down and we moved on. The impatient part of me didn’t want to end it that way, but the reality is it would have done no good to force something.

Wednesday night, I will take the overnight shift so that Carolyn can attend Megan’s kinder graduation. It will also give Carolyn and chance to sleep at home, which I know Megan will also appreciate. The main reason we’ve avoided swapping is that we really don’t know how she will respond if she wakes up in the middle of the night and I’m there instead of mommy. But, at this stage, we’re going to give it a shot.

Thank you again for your prayers – we definitely need them! Pray that little Chloe realizes that she has parents and family who love her and that she can trust us. And, as a result, hopefully overcome the fears she has that is preventing her from eating.

Poor Chloe had a rough night last night. Her IV started to pull out of her hand, so they had to put a new one in. A lot of screaming involved with that. (Poor mommy had to be there and try to help hold her down.)

And still no major change in terms of eating. One doctor thinks that part of the issue might be due to the fact that she has to breathe through her nose while eating and swallowing. Something totally new for her.

She will work more with the feeding therapist today, but they are also thinking of installing a feeding tube that would allow her to receive nourishment directly to her stomach / intestines. That way, we could get her home and continue feeding therapy outpatient. I hate the idea of doing that, but if we can get rid of the IV and get her to the comfort of home, my guess is that would be very helpful.

Anyway, she has a long road ahead. There is another surgery to do at some point and other developmental delays and institutionalized behaviors to work on. Please pray that we would have wisdom and discernment as to how to best help her. Likewise, pray that she would be healed from whatever is causing her to not eat. Since she can’t talk, all we can do is make educated guesses based on behavior (which is fairly unsettling).

Megan continues to do well. She woke up happy this morning, although I know she misses her mom. Thankfully, Carolyn did get out of the hospital for a few hours yesterday, which was helpful. We are very grateful for grandma and papa’s help (Carolyn’s parents), as well as so many other family and friends who are thinking about us and praying.

Chloe still hasn’t eaten, unfortunately, but some progress was made. We discovered a vibrating toy that she likes, particularly when we place it on her head. The food therapist was able to use a vibrating spoon and Chloe allowed that to touch her lips, and also licked it. This was all done while the vibrating toy was held on her head – it was quite an interesting sight!

That doesn’t sound like much, I know, but at this point we have bad to focus on basics of touch near her mouth. There are other things we are trying as well.

We have been able to get Chloe out of her room a number of times, which she enjoys. She did some walking in the hallways today, but ran out of steam after a while.

I took Megan to church and actually had her looking pretty decent! Although I am guessing most mothers could tell that it was daddy who helped her get ready. We then had a quick lunch with Papa, then joined Carolyn, Grandma, and Chloe at the hospital. Megan had fun in the play room with Grandma and Papa while Carolyn and I experimented with the food therapist (who is very nice and helpful).

I am currently hanging with Chloe to give Carolyn some time at home and with Megan. We talked about the idea of me staying overnight instead of Carolyn, but realized that may not be the best idea. She is used to seeing Carolyn if she wakes up in the middle of the night and I really do not want to do anything to set her back further.

Anyway, please continue to pray. I will try to keep you all posted at least once daily. Thank you!

A feeding specialist spent some time with us today working with Chloe. After trying a number of things, we unfortunately had no success. At least Carolyn and I know that this isn’t related to anything we are (or are not) doing!

So, she will be in the hospital overnight at least one more night, possibly longer. The therapist wants to avoid releasing her until she has 2 decent feedings, which could take a while.

Chloe will be transitioned to the care of the pediatric team since the issues are feeding, not surgery related. And the feeding therapist will be back tomorrow to work more with her. A nutritionist will also be involved – it may be necessary to use a feeding tube of some sort until this is resolved. (I hope not.)

Megan has been great through this. She spent a lot of the day in the hospital with us, although I did get her out for quite a while. She is at Grandma and Papa’s house this evening. I will then stay with her at home.

We are very grateful for the excellent care we are receiving. Each person we have dealt with has been caring and good at what they do. But, we really appreciate each of you reading our blog and Facebook posts. Your prayers and comments are encouraging. Please continue!