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Wednesday, August 01, 2007

Amazing News!!!

We’ve actually had some really good news, in fact great news.

I think I feel a bit of “post-trauma stress” or something, as I don’t actually know how to feel…Are you sitting down????

KAITLYN IS EATING!!!!!

Ok, let me back up a bit….

I think I’ve been procrastinating writing this blog entry, for fear of jinxing how well Kaitlyn is EATING!

Feeding Therapy Preparation

Dr. Meeta Patel www.Clinic4Kidz.com came to our house about 6 weeks ago to do an evaluation session with Kaitlyn. (Sorry I never posted a blog update from that session).She watched us feed Kaitlyn (well, attempt to feed Kaitlyn, as usual, all Kaitlyn would do is take her Slim-Jim in her mouth, bite off a piece and then spit it out or gag and vomit on it. Forget getting any spoon fed food in her mouth. And all other finger food ended up on the floor (along with spoon, etc).

We then spent quite some time discussing Kaitlyn’s current feeding schedule (tube feeds, Blenderized diet, volumes times, etc) as well as her entire medical history.

She felt that Kaitlyn would be a really good candidate for her program.

Here are some of the preparation items we had to do after our half-day consultation:

  1. Get a new high chair that has shoulder straps…So the super duper high-end high-chair that we owned (a Swan) wasn’t going to work, as there were no straps and it was too low coming up the back.
  1. Get Kaitlyn accustomed to sitting in a high chair for 30 minutes at every feed and use a timer with an auditory alarm. Use a timer so that if she’s having “bad behavior” she can’t get out until the timer goes off. And she has to be in a good behavior mood in order to remove her. This actually wasn’t much of a problem. She didn’t eat while in the chair, but we could play with toys.
  1. Even though Kaitlyn turns her head away from the spoon when presented to her, don’t take the spoon away when she turns her head, instead follow her head with the spoon, so she stops associating “turning her head” with our removing the spoon.
  1. Purchase a lot of items: 1: A magic-bullet blender (remember we already have the best blender on the market a Vita-Mix. But our blender doesn’t handle small quantities very well. 2) new high chair; 3) ice cube trays; 4) small feeding bowls with tops; 4) toys and videos that she’s never seen before and a sealed bin to put them in 5) a lot of specialized food items 6) a portable DVD player 7) I’m sure there were more items, I just can’t remember them now – All in all, I probably spent $500 on all these new items.

I think spent the next few weeks dealing with trying to get my insurance to approve Dr Patel’s services. I spent a LOT of time on this. Practically a full-time job….and of course, though out this entire time I do work full-time. This is still pending.

Over the July 4th holiday, Brian Kaitlyn and I did get to go to Tahoe. This was our first real “vacation” trip together as a family and the first time we’ve all gone to the mountains. Sadly, as beautiful as Tahoe was and amazing that it was to be back there after so long, it wasn’t much of a vacation. Just about as soon as we got there (in fact before we got there on the road), Kaitlyn started vomiting. A LOT. Back to her old self vomiting. Every meal. She was even vomiting up the water. After about 5 days of this I could tell that she was loosing weight and I started really worrying.

I also got a call on the 5th of July that once again my insurance was denying our request for feeding therapy, as they considered it behavioral? Where were they to watch my daughter vomit up every single meal that we tube fed her. Behavioral.

I lost it. I actually had a break-down. A major break-down… I sobbed and sobbed and couldn’t believe my life. I was so incredibly worried for Kaitlyn’s health at this point. I was afraid we were going to have to take her to the hospital to get fluids in her. We just left some friends with 2 children who were great eaters. The baby (younger than Kaitlyn) went around begging for food. Wow - was I ever jealous. We didn’t have a normal life. This was soo, soo hard. Our car stunk like vomit, I stunk like vomit. My baby was loosing weight that I had fought so hard to get in her in the first place. And on top of everything, the feeding therapy ($1700/day) wasn’t going to be covered. This was ridiculous.

At least as soon as we got back home (and I confirmed that she lost 1 lb) her vomiting subsided back to just one time a day. Yeah. Just once a day. (Isn’t that ironic?)

Monday July 16, 2007 – the day our lives changed …..

It was with excitement and some trepidation that Dr Patel and her assistant Jennifer arrived at 8:00 on Monday morning. This is early for the McCarthy girls as I had to wake Kaitlyn up from a DEEP sleep (remember that I’m always up late, feeding Kaitlyn tube feeds until 1 am or so), so it never much bothered me that she liked to sleep to 9am.

Dr. Patel and her Assistant were there bright and early – this was the start.

Well, we sat Kaitlyn down in her new high-chair and they put on a DVD (the mini-DVD player that she’d never seen before). They videoed the session and the Assistant started “feeding Kaitlyn”….They said “Take a bite” and fed her an empty spoon.. Huge cheering to her opening her mouth for the empty spoon. It was a loud cheering section. Really loud. Clapping, grinning excited waving, etc (we’ve done all this before – the cheering and all, but obviously we didn’t do it correctly). (Kaitlyn actually would open her mouth for an open spoon, which is supposedly a big deal for an oral averse child). They repeated “Take a bite” for 10 times, the cheering every time and then they repeated the whole thing again with water on the spoon. Back to an empty spoon – 10 more times. And then…..a bit of yogurt on the spoon. Kaitlyn responded with her typical behavior, not interested, refusal, they tried a few times, then went back to the empty spoon and water on the spoon.

That was the end of the first feeding session.

A few hours later for her next meal (after putting ½ of her regular tube feed and some water into her belly via gtube). They started again, same structure. DVD playing, set the timer, tell her what was happening, and then empty spoon, water spoon, empty spoon…….yogurt. Lo and behold. She opened her mouth. She took the Bite! I couldn’t believe my eyes. My nanny and I both started crying. It happened again. And again. And again. She ate an entire ounce of yogurt (to a heck of a lot of fanfare and cheering from everyone). She opened her mouth, wider as the feed went on. She stared dead on at the DVD the entire time. (I had also prior tried DVD’s with no success).

That was it. They made the timer ding and she was done with her first official meal – eaten entirely peacefully by mouth! I was in SHOCK. Complete shock.

The 3rd meal went just like the 2nd, where Kaitlyn ate an entire ounce of yogurt. A few times she didn’t open her mouth very wide, and they would hold the spoon to her mouth until it was open wide enough. A few times she didn’t open at all, and they would use a finger placed on the side of her mouth (like the rooting reflex) and she would open it. Sometimes she would scrape her teeth on the spoon or not take all the food off the spoon. In all those circumstances she was shown that she had to finish her bit completely (they were very tiny bites on the spoon).

It was going really, really well.

WOW!!!

I really can’t explain how I felt/feel.

I don’t know why it’s so hard to explain. Why it’s been so hard to write this post.

Maybe this is how post-traumatic stress disorder feels. I was in complete shock and utter fear at the same time.

Here are some of my racing thoughts, that really started to hit home after the 3rd meal:

That was it?

Why couldn’t I have done that?

Why couldn’t her feeding therapist have done that? We went weekly for 7 months…7 MONTHS! And her feeding therapist was really, really good.

WOW!

Crying. Emotional. Disbelief.

I wouldn’t be able to duplicate what they were doing, it was going to back to the way it was once they leave (remember they were at our house for 10 hours a day for 5 full days!)

I’ve spent almost 2 years of my life dealing with a daughter who refused to eat and they got her to eat in 2 feeds?

Why couldn’t I make her eat?

Would she be able to eat enough to stop the tube feeds?

How in the world was I going to be able to get her to eat enough?

I’d have to deal with all this preparation of the special caloric meals and have to make her Blended diet and deal with the tube feeds. Oh gosh, all the work, just what I needed more work to do.
Oh no, this was going to be really, really difficult

What do I tell people when they ask what did the therapists do to make her eat?

I feel like a looser and a failure.

How could I feed her only purees?

Would she be able to handle other foods besides yogurt?

How about milk, will she be able to drink milk that she completely refused.

How is she going to learn to chew solids, when now she gags on any food that enters her mouth?

Was she going to vomit?

Was this all really real?

If I blinked and woke up was this all a dream?

Do you think now she can go to regular school?

Can we have our parents or a regular baby –sitter?

Can we have a normal life?

I felt like I was in a strange time warp or something.

Anyways, you get the point. I really think part of my delay on writing this post was to make sure that she really was going to eat, that we could learn to feed her and that she would eat for us too! And to be honest, it’s still very hard to explain exactly what they did.

Liquids:

On the 3rd day they decided to introduce liquids to Kaitlyn. Oh boy, I was a nervous wreck again. Although Kaitlyn did like to drink water and juice, the majority of it was spit out and she only took tiny itsy bitsy sips. And whatever she didn’t spit out, she typically chocked and gagged as it went down the wrong way (I’m sure due to her paralyzed vocal chord). Milk, forget it! I tried on occasion and I had complete refusal. Complete.

They used a plastic squeeze bottle with a tube attached and squeezed a very small amount of milk-mixture: whole milk , Carnation Instant Breakfast and Simply Thick (a nectar-like thickening agent) into her mouth. She wasn’t a fan and spit it out (K’s typical behavior). They quickly squirted more in her mouth and this time held her chin closed so she couldn’t spit it out and counted to 3.

They did that just a few times and Kaitlyn quickly learned that she could no longer spit it out. It wasn’t traumatic or anything, it was sort of matter of fact. Then she just went about taking sips of milk and watching her DVD…

Eventually after a few times, she worked her way up to 1.5 ounces of milk. After the milk they went on to the purees.

It’s going amazingly fantastic!

(Now, Kaitlyn is still vomiting, and I’ll get to that in a minute),

But I wanted you to soak up our utter and complete joy!

In just 3 days, we were able to transition Kaitlyn from 100% of her food by feeding tube to only 6 ounces of food at night and water during the day and night. Basically we have completely eliminated any tube food during the day. Eliminated within 3 days!!

Kaitlyn gets water via tube during the day and night and gets a Blenderized Diet meal (of 6 ounces) during the night (over a hour or so). Remember my midnight feeds….no more!!! What - I can go to bed before midnight? I haven’t done that since my girls were born.

I’m crying as I type this. I truly truly thought that my daughter would be going to school with a tube and would be tube fed for years and years to come. It wasn’t just my being negative; I spoke to many other tube fed children’s’ parents. I had prepared myself for years of tube feeding so that I could get over the daily disappointment when ever we tried to feed her and got nowhere.

She now EATS: 1.5 ounce of milk and 3 ounces of purées, for a total of 4.5 ounces at each meal. 5 times a day. It’s VERY structured. Very structured. Dr Patel warned that we had to stick EXACTLY to her instructions. (Believe me we are sticking exactly to the plan) We were given a 10 page instruction manual (treatment notes), menu plans for 3 days, ingredients to up the caloric content of her food, instructions on how to make and freeze the food, progress report sheets to take notes daily (detailed notes).

What did Dr Patel do?

As I said before, I don’t know exactly what she did differently. It was a lot of structure, very serious structure. It was saying the same thing over and over to Kaitlyn to force some behavior. It was serious. If Kaitlyn did anything that wasn’t allowed it wasn’t going to get by. (I still scratch my head trying to figure out exactly WHAT they did differently). This was serious business. If Kaitlyn hand’ opened her mouth on her own, she would have been forced to.

When I tired to force her to open her mouth in the past I got nowhere. Just a lot of tears and shock as she stared up pitifully at her mother trying to be mean to her. Dr Patel really knows children with feeding disorder and I have to thank her immensely for her knowledge. She did indicate that Kaitlyn proved to be very intelligent and probably responded quicker than the majority of her patients. Her Assistant said (as she left the last day) that most children got to where Kaitlyn was the last day of the first week, but just not as quickly. Wow.

10 hours a day for 5 days. It was exhausting. By the 4th day, we were starting to be trained on how to feed our daughter. We even did role play, feeding the assistant, with her giving us bad-behavior and our instruction on how to react to it. It was nerve-wracking. (OK, this is really crazy that it was nerve wracking learning how to “feed” an 18 month old baby). We (Brian, our nanny and I) all had practice sessions (with the assistant) and then took over towards the end of a feed. The first time I was a nervous wreck. My poor nanny told me she was too during her time. She said her heart was beating out of chest (ok, this really is crazy, but true!) The milk-squeeze bottle… oh my…you were so nervous you’d squeeze too much, that you’d gag her with the straw…oh a million things to be nervous about. It was so scientific the entire time they were there – we were automatically nervous by how “serious” the feeding sessions were.

They left. They left during the last meal of the last day…it was STRANGE. We were on our own. We prepared the meal, started and they left. OMG. Could we really do this? Of course my first day I was going to be totally on my own (no nanny, no Brian)….

I didn’t sleep a wink. Would I be able to duplicate their methods?

Saturday came and went and it went really well. Amazingly well. I can do this….! I can feed my daughter and she can eat by mouth. I can make all the food, do the food prep. I can do this and best of all, Kaitlyn can eat!

It’s been 2.5 weeks now. And it’s going amazingly well. 4 days ago for the first time we ventured out of the house. Brian and I packed her DVD player, containers of her food, the milk /squeeze bottle, etc. and we tried to feed her. It worked! I fed her in her high-chair (as it has shoulder straps). I’m sure we were stared at non-stop, “how horrible are those parents that they allow their child to eat with a DVD on.” (The plan will be to fade out the DVD distraction eventually, but we still have a way to go).

I had friends in town this weekend, and took 2 meals in a row out. One in SF at a restaurant - in a restaurant high-chair. Whenever I’ve been asked if I need a high-chair in the past I laughed. Now this time I said “YES, I need a high-chair”. This may seem like an innocent statement, but to me it says it all! Yes, I need a high-chair, my child eats!!!

Now a bit of bad news. Kaitlyn is still vomiting. When she vomits, the vomits continue to be HUGE (empty her stomach huge). The first time the therapist Jennifer saw a vomit (on day 3) she even commented on how large the vomit was. These aren’t refusal vomits (some children learn to gag and refuse food via vomiting as the parents will stop feeding if the child vomits). We are back to the age old question of why Kaitlyn vomits.

The majority of the vomits have come with a bit of a pattern. Pancakes. Chicken. Both of these seem to be major culprits. The pancakes are think (remember they are purees). It seems to come towards the end. I think the pancakes are very filling in K’s tummy. The chicken tends to clump up a bit after being frozen.

OK, how in the world will we get Kaitlyn to EAT (chew). (It’s ironic isn’t it, that a week ago I was begging and pleading for my child to open her mouth just a bit to get something in) and now I’m already moving on to say, hey, let’s get her onto age-appropriate self-feeding and chewing and drinking her own milk (that’s not sweetened or thickened) and not gag on water. One time there was a bit of peanut butter that must not have been pureed, and Kaitlyn took it out of her mouth with her fingers. She knew this wasn’t a puree and didn’t’ know what to do with it.

Another time a chunk of something was there and she vomited that up (along with everything else I had just fed her).

We were strictly instructed on how to deal with vomits. Basically ignore them. Clean her up enough, point and talk to the DVD as if nothing was happening (her emptying her stomach all over the place, chair, clothes etc), and when she stops, continue feeding her. It’s very important for her NOT to learn the behavior that if she vomits she stops being fed. So amazingly enough, she would open her mouth just like before the vomit started and we finish feeding her the remainder of her meal. (we don’t make up for the lost vomit amount). Side note: a tube mom friend of mine pushes in the just vomited food back into their child’s stomach to make up those calories. It’s an interesting thought. As the food just went in a few minutes before…..It’s just really gross…..But I hate seeing all that hard work (and calories go to waste!)

Insurance Update:

The Tuesday after the feeding therapy week, I got a call from our Doctor’s office with some amazing news………drum roll please. All of my hard work and efforts and energy had paid off….the local medical group realized that they didn’t have anything comparable in-network and they decided to pay for Kaitlyn’s therapy. (and how powerful is it that the therapy worked!!!) I thought initially that they might only pay for on-going therapy, as the intensive week long session (at $1700/day) already took place), but they agreed to pay for the week…

What news!

I’ve researched, fought and fought and got my daughter the care and the services she’s required. I can’t even imagine what other families do when they don’t have the ability to research and fight like I have. It really breaks my heart.

You have to take matters into your own hands. The Doctors don’t always know everything. We were continually told that we should have surgery to surgically wrap the top of her stomach (called a Nisan that is a life-long surgery). I was never ok with this solution. It didn’t solve the problem. It just put a band-aid on it and I didn’t want my daughter to regret one more thing about her life. She is already left with scars on her feet and hands from all the IV’s and prodding she had when she was first born. Her PDA heart surgery scar had grown quite large on her shoulder and left her with a paralyzed vocal chord. When our doctors haven’t known the answers, I was never ok with that. I knew I’d find answers or solutions (even though we still don’t know why Kaitlyn vomits).

I’ve learned so much from other’s I’ve never met. And I’m so happy to give back to others in any way I can. I know I’ve since helped other parents with their children. Whether they are micro preemies or children with feeding disorders. Local and nationally. My Micro preemie support group that I started now has 145 members (If you are a micro preemie parent and want to join see the link to the right under Resources). The youngest preemie ever to survive even belongs to our group. (Amelia, who’s mom I’ve spoken to on the phone)

It helps me to help others. This has been and continues to be the hardest thing I’ve ever had to deal with in my life. I always felt that I was destined to be someone special in life- I could never have imagined that this was what was expected for me. As hard as this has been…. And how much my heart and my arms ache for my daughter Corinne…I have to say that I’ve come to a place of peace and tried to find the positive in what’s happened. I’d take my full-term twins in a heart-beat, but I’m at peace with where I find myself in life now and I’m glad that I can help others in someway.

My last post was very sad and heart-wrenching. I still have those days. I wrote that in the middle of these amazing feeding successes. We aren’t done yet. Kaitlyn still has to learn how to chew and how to drink. We still have a road to travel.

Today Kaitlyn had a follow-up eye appointment (the eye doc was thrilled that she loves her glasses and her ROP is gone). She continues to have multiple therapies a week. But you know what, I feel for the first time since my twins’ were born I really feel that Kaitlyn is going to be ok. That I’m going to be ok. That our family is going to be ok.

Kaitlyn social update:

You know what? Kaitlyn is happy! She’s not just a bit happy, she’s the most amazing happy baby that any parent could ever ask for. In a matter of months, my serious, nervous never social baby has been replaced by the most amazing, smiley happy content girl. She’s amazing. I don’t have another child to compare her to, but I really think that I have been truly blessed with this amazing spirit of a child that is happy and an utter joy to be around.

She never cries. She’s never upset. She’s full of energy and life. She’s happy to be here. There isn’t a day that goes by that I don’t appreciate every single minute that I have with my most amazing daughter…I am utterly joyful.

She’s learned to hum a tune. She’s says “mama” (very quietly) whenever she misses me. She has quite a signing and verbal (quiet) vocabulary. She’s joyful and adventurous and smart. She’s truly a miracle that I feel incredibly blessed to have in my life. (yes, I’m crying again). How can I be so lucky to have such an amazing daughter?

Thank you for your continued support. I’m sorry I haven’t been great with posting lately…But as you probably know when I do post they are worth the wait!

I have videos of her eating…I hope to get them posted soon!

32 comments:

Momma Monkey said...

What an absolutely amazing Mommy you are !!

Way to go !!

Hechung said...

Oh Liz, I am so so happy for you guys and got teary-eyed reading of Kaitlyn's successes. I can't wait to see the videos and new pics of Kaitlyn :)!

Laura said...

oh my god, i am crying tears of joy!
i remeber the 1st time my sweet boy was eating. it is so (expletive inserted here) amazing.
my dear i am so happy for you guys!!!!
on to the next leg of your adventure.
no, it is not over but this is a major turn and you are well on your way.
perhaps i should sign on to this micropreemie mom group....as a mommy of course! i am interested if there is room.
hugs for thois big event.

Sheri said...

WOW- you brought tears to my eyes- I am soooo happy for you guys! Though we haven't had nearly the feeding troubles as you, we have had feeding troubles and have been seeing someone weekly since April (and prior to that when my son was younger) We are making progress, but it is slow and painful, and I totally can relate to the emotions of why can't I feed my child- I spent the first 4 months of Sammy's life deseperately trying to feed him ( he was low birth weight and later called failure to thrive- we came within days to tubing him) and no Dr. listened to me, finally after 4 months we went to a feeding specialist and she sent us to an ENT and he diagnosed laryngeolamalacia...unfortunately for us, this would be the first of many diagnosises, but at least it was a step in the right direction....my point is I am SOOO HAPPY for you and I will pray that this success continues!!! How awesome for you!

By the way my little guy is 18 months too:)

Many blessings!

shammerama said...

Hi Liz,

I have been on the edge of my seat waiting for exactly this post. How incredibly fabulous! And insurance has covered the therapy, double wammy fabulous!

We, too, have had some success lately. Saul has been completely off his NG tube since Memorial Weekend. Tada! Whoohoo! And, he even gained a few ounces lately.

Our secret weapon? Heavy whipping cream added to his food. FIFTY CALORIES PER TBSP!

But same as Kaitlyn, he will only eat purees and is quite adept at separating any lumps and spitting them out.

Yes, it's still a long road ahead but eating by mouth? Priceless.

All my best to you and your family,
Sara
(SFBATFS)

Anonymous said...

Delurking for this one - wow! What wonderful news!

It's awesome for you and your family that things are going well.

You are a wonderful parent (and family)!
-Jane

Melissa said...

I am so happy for youb guys. That is such awesome news and what an awesome job K is doing. Things have come so far for you guys and i am just so proud of both you and her!!!!!!
Way to go guys!!! Good team work!!!!
Love Melissa

Anonymous said...

I have been following your story since the beginning and have to say that tears were in my eyes when I read the news that Kaitlyn is eating! You are an amazing person and have a wonderful family!

Jenny said...

Wow.....This is truly amazing Liz! It's all I have ben praying for!! I am crying right now big ole crocodile tears of Joy! Way to go Kaiti!!

Liz, you are so amazing...I cannot believe how lucky your little girl is!! Wow....pinch me.

Anonymous said...

Awesome news!!! WTG Kaitlyn!!!

I'm so happy for you :)

Christina
(aka Logan's mommy)

cm said...

Oh WOW Liz! I'm crying with you in complete joy! K has come so very, very far in the last month. I hope her great work continues!
Thanks too for starting PBM...it has been such a comfort (and info wealth) to me.
Cora
mama to Amelia

The Walsh's said...

I hope you don't mind that I add a link to your page on my new blog about my 24 weeker Lincoln. Let me know if that's a problem. I have loved reading yours!

Kim said...

I had been afraid to email you and ask for an update about Kaitlyn's eating. I was so amazed when you told me about the yogurt, but this? Five meals a day? No tube feedings during daytime hours? THIS is truly amazing. Another miracle in the life of Kaitlyn McCarthy. There is nothing that kid can't do when she is ready to do it.

Tears and goosebumps for you. I am so very happy for all of you. You finally got the goodness you all deserve. Many hugs! And congratulations, Kaitlyn, you little fighter!

NHDOLL said...

Congratulation! I have been reading about your family since I found your blog by accident I spent hours reading every post and looking at every picture since the day the girls were born.

It makes me sad when you get down on yourself for things that are beyond your control. I am always happy when you and Kaitlyn battle and over come another problem that is handed to you.

Rhonda Nichols
New Ipswich, NH

abby said...

Liz,

This is all so wonderful. I know how hard of a road it's been, and how emotional, but it is so good to hear your description of Kaitlyn eating, Kaitlyn being happy, everything getting better on so many fronts, incrementally.

You guys are tremendous and you are such a wonderful mommy to Kaitlyn and so supportive to the rest of us moms, regardless of where we are on this particular journey.

BIg hugs and much congratulations go out to you from us...

Abby, Sharon, and Hallie

The Krumwiede Six said...

We couldn't be happier for all of you in this success!!! You are miracles... all of you!!!!

Anonymous said...

That is wonderful! I was in tears for you reading about Kaitlyns feeding successes! Way to Go being such an awesome advocate for your daughter!

Anne

Shana said...

Yeah Kaitlyn!!! I am so happy to read this post. So many wonderful updates.

I pray often for you, Liz. I don't even knew you, but I really do pray for you and your Kaitlyn. :)

Kellie said...

I'm crying as I write this...I am so happy for you and Kaitlyn! Thank God the feeding therapy worked. I can picture her adorable face gobbling up those purees and watching her DVDs. You have waited and worked long and hard for these wonderful moments Liz and it must be overwhelming to see Kaitlyn eating orally!!

Congrats and don't forget to post some pics of her eating (once the routine kicks in and she is more comfy with it all).

Anonymous said...

Hi Liz: LOVED reading every word of your latest blog entry. So encouraged by Kaitlyn's eating progress. Corrine is shining down on you! I hope my girls can meet Kaitlyn, you and Brian someday...what an inspiration you are! And happy real estate selling...lots of activity in our San Anselmo neighborhood this summer....

Maria K.

Sarah Furlough said...

Liz: What wonderful progress Miss K has made. All of your hard work is paying off, I can't believe she is eating so much so soon. Please keep us posted!

Kristina said...

I cried as I read this, because I know exactly how you feel. Unless you've had a child who starves herself, you can never understand the stress and strain this puts on the mommy (or whoever is in charge of feeding the child). I am SO THRILLED that Kaitlyn is eating!!!

Thank you for posting all the details, too. I'm sure other parents will learn from them.

As for feeling like a failure, please don't. One of the things I've learned is that even though you've tried something before - even many, many times! - one day, suddenly, without warning, it will work. It's really hard, but as parents of kids who don't like to eat, we have to keep ramming our heads up against the wall.

I do so wish the docs would figure out Kaitlyn's vomiting, though. Do you think the feeding doctor you are working with will be able to help with that?

Hugs,
Kristina

Anonymous said...

Wow that is amazing!!!!!

I hope your feeding successes continue to grow!!

hallegracesmama said...

I left a comment the other day, but it disappeared somehow. But Congratulations on all of the eating progress! I just watched the video, and Dr Patel's approach is very similar to what Halle's therapist has been doing - for TWO YEARS. The intensive approach, while encroaching on your life a bit, is amazing. I am so happy for you all!

BusyLizzyMom said...

Congratulations!!! I can tell from your post you are absolutely over the moon. It is so crazy that we can get so excited about what can come naturally for other children. We wish you all the best with Kaitlyn's eating. Who knows maybe one day a completely oral diet could be in the future.
Angi (mom of Elizabeth-Ann)

P.S. Elizabeth is still a big barfer too. She is like a loaded cannon, we never know when she'll go off.

Jodi Donnelly said...

Oh Liz,
I'm soooo thrilled for you! How wonderful. Kaitlyn is looking like such a big girl, and so happy. I'm so glad that you're finally getting positive results from all of your efforts. What a great reward, I know how overjoyed you must be.
Many many blessings to you!
Hugs,
Jodi (PROM)
mom to Anthony

Kristin said...

Hi Liz,
I read this post and was on the edge of my chair hoping that insurance was coming thru for you... I had no doubt in my mind that Dr Patel was the way to go, and even though I only "know" you from here, I am absolutely grateful to Dr Patel for helping Miss K, you and Brian to making the future a sunnier picture and I can't wait to see K dig into her birthday cake and eat it!

We've been using the tv as distraction for quite sometime, and I've started the 'force' treatment with getting food in - we need to get off the bottles but I can't deny her the calories she gets - and she can't eat Cheerios forever...

Way to go Miss K..

hugs to you all,
Kristin & Presleigh

Anonymous said...

Liz,

It has been a while since I checked your blog and what a range of emotions from your last few posts and pictures. I cried tears of sadness, then got goosebumps and just started sobbing with joy for you and Kaitlyn. I called my mom and read it to her over the phone! I have been praying and hoping for the day that Kaitlyn eats for so long, and it actually came! I know this is just the beginning of all the wonderful things ahead for you. I am in awe of your persistence and tireless fight for your daughters from day one. You are an inspiration and deserve all the happiness in the world. Congratulations on Kaitlyn's remarkable progress, on getting insurance to cover her care, and on surviving all that you have been through so far. You are one of the strongest women and most courageous moms I know!
Best,
Jessica Flemming

Kendra's mom said...

Hi

I started reading your blog over a year ago and what a transformation! Kaitlyn is doing really well as are both her parents. I must say I cried when I read the feeding post and cried again when I read the July 26th post. I hope you don't mind if I do a link to this post from mine. I have always felt quite strongly about not being forced into doing an amnio and it is something I will probably be writing about on my blog.
And you know, you must not beat yourself up about them getting the feeding right when you couldn't. Children just react differently to other people than to their moms, where they would act out with their parents they will be good as gold with a stranger. Especially if the 'stranger' does not give in to them. You have done brilliantly and don't you ever think otherwise.

trish said...

Liz, this is such great news! I'm so happy for all of you. I'm glad to hear you accept and put in print the job you were given here - to be an excellent mommy under stressful conditions and to be a huge help and wonderful role model to others. I've said this before: you are AMAZING!

-t

Michelle Fuller said...

Congratulations! I understand.

The accomplishment in my life that I'm most proud of is breastfeeding my 26 weeker.

We haven't had half the problems you've had, but I've been there with advocating for my daughter. I feel proud of my ability to do that. I feel fabulous when I do it well and it needed to be done. But it also feels like a tremendous responsibility.

Next up for us is a biopsy of a hemangioma. Most likely, it'll be no big deal. I think that's the truth, but it's also just what I need to say.

And again, congratulations. I've felt that surprise of suddenly being granted a more normal daughter than you thought you had.

bluee19 said...

Can you tell me your experience with clinic4kidz? My daughter is having trouble eating and we may need to get a g-tube. Can you help me out by telling me your experience. Thank you, nicole from CA.