Happy Birthday Aunt Beth!!

Happy (Belated) Birthday Aunt Beth!! Colin and Kailey love you very much and can't wait to celebrate your birthday with you!! (Sorry for my Mommy brain!)

Happy Belated Birthday!!! oxxoxoxo

A Feeding Update and Life Update

You wanna know how our feeding venture is going? ...I think Colin says it all in these pictures...

I probably shouldn't be doing an update on a day that was such a challenge because my mentality may be a bit skewed, but just about two weeks in and we are still working hard. Although Chris feeds Colin his breakfast, I have taken the most control over feeding and haven't let anyone else feed him yet. I just feel that since we have to buy into this program right now, I just want to make sure that it's getting done at every meal. I have even been going to Colin's school and feeding him lunch, not because I don't trust them, but because I have the opportunity right now for the next month while I am home and I want to make sure that every bite he takes, it is the way they say we should do it.

However, I haven't noticed much of a change in what they want to see change right now. When we give Colin a spoonful of food, we are supposed to apply pressure to his tongue and then push up and give jaw support under his chin. This is supposed to eliminate the "munching/sucking" motion that Colin has been doing since the beginning. We are only 2 weeks in so I'm guessing we wouldn't see BIG changes yet, but I feel like he has figured out how to accomplish his old habits, despite these methods we are using.

I feel uneasy at meals because we are deviating from the accomplishments we had made with self-feeding and it concerns me. I don't want to set ourselves back too far, but I also don't want to deviate from the "plan". I just wish I knew where we were going right now. It's amazing to me how easy eating comes to some children. Since I have been feeding Colin at school I notice how easily some of Colin's classmates eat. They are eating with spoons and forks things like pasta noodles, sandwich wraps (wraps!!), pigs in a blanket, pizza, etc. It's crazy! Poor Colin is sitting there eating his pureed cottage cheese with fruit (ugh!).

I try to keep my frustrations and concerns to myself though during meals because I want to keep this happy face on my little boy.

Tonight, I had a little boy that was not happy with the "plan" and decided to spit most of his food very forcefully at me while Kailey screamed in the bouncy seat at my feet...fun times!

In a lighter update, right before we were heading out the door this morning, Kailey had a poop explosion so I was busy changing her diaper and clothes. Colin kept busy by pulling all of her diapers out of the cabinet. Just follow the diaper trail and you will find where Colin was hiding...

The trail led under the crib where Colin was sitting on this bin, shoving diapers behind the bin next to the wall...

Silly boy!

Colin is finally warming up the fact that Kailey is here to stay and is not as distant to her. He has taken more of an interest and is starting to do the things I have been waiting for...kissing and hugging his little sister. He still likes to hit and swat at her, but he is doing it less and less. I realized they both happened to be in their onesies tonight before bath and pajama time, so I tried to set up some pictures.

Colin was happy, Kailey on the other hand, was not...

In this next picture, Colin was actually talking to kailey (I'm guessing he was telling her that it was ok)...

...maybe hitting her in the face will make her stop crying...

...but sweet brother is back talking to his sister and giving her kisses.

Colin and Kailey

Ever since Kailey was born, I have been thinking about my two birthing experiences constantly because at times, I can't believe just how different each one was. Now that Chris and I are in such a different place, we easily discuss the day Colin was born and even make some jokes about the day. Now I know that comparing Colin and Kailey's births is like comparing peas and carrots, but, I still find it interesting nonetheless and I thought I would share some of the things that stand out to me. Labor: Once I started with contractions with Colin, they progressed quickly and 12 hours later, he was born. With Kailey, I was having regular contractions for days and even spent 9 hours in the hospital the day before to get sent home. I got an epidural for Colin that didn't work and then his heart rate started dropping and not coming back up to where he became an emergency delivery and I was moments away from having a c-section. The delivery itself was not enjoyable because of the stress and the pain. With Kailey, the epidural was wonderful and the delivery was smooth and calm. Holding my babies for the first time: As soon as I held Colin, I could tell that his eyes were different and I'm not sure if the words Down Syndrome crossed my mind, but something didn't feel right to me. When we look back now, there was tension in the room and a lot of hushed whispers. As soon as I held Kailey, I will admit that I was searching her eyes for a clue, and even asked Chris what he thought. You could just tell looking at her that her eyes were swollen from the delivery, but she did not have the beautiful almond eyes that Colin was born with. The room was light and cheery and did not feel somber the way Colin's did. Moments after deliveries: After Colin was born, he was put on the warmer to get cleaned up after I initially held him and I had asked Chris to get the camera and go take pictures of the measurements (weight and height, etc.). I remember the doctor telling him to wait kind of sternly, so we actually don't have any of these pictures. At the time, I just thought that he wasn't allowed (that must have been when the doctors and nurses were discussing his possible diagnosis), but I thought it was odd because I could remember seeing pictures of my friend's kids getting their measurements done. With Kailey, the doctor and nurses were surprised we weren't immediately snapping pictures, and more than once, told Chris to get the camera to take pictures of her measurements. I was given Colin back after his measurements were taken, again, sans pictures. Appearance: Although these pictures don't show it, Colin and Kailey looked very different. Colin weighed in at 6 lbs 4 ounces and was 20" long while Kailey was 7 lbs. 15 ounces and 21 inches long. Both were full term, 40 week babies, but Kailey came one day later than Colin. Both were very healthy at birth, but Colin had trouble regulating his temperature which put him into the special care nursery along with his feeding difficulties. Colin has shorter fingers and toes, while Kailey has super long fingers and toes (but they are like their Daddy and Mommy respectively).

Alertness:

Although Colin's eyes were briefly open after birth, he pretty much slept the rest of the time we were in the hospital. Kailey was very alert for awhile after birth and then slept the rest of the time with a few bouts awake. We saw Kaileys eyes open a lot more than we did Colin's. After we were told that he was being tested for DS (we think it was about 10 minutes after the delivery), I remember analyzing his eyes incessantly. When he was asleep (which was all of the time), I was able to convince myself that he didn't have it because his eyes looked "normal" (whatever that means!). I had even asked my mom and my sister what they thought!

Feeding:

Wow, this is probably the biggest difference. I am going to lump crying into this category too because they kind of go hand in hand. I remember bragging when Colin was a newborn because we would get asked all of the time if Colin ever cried. We would smile and say no, he was such a calm and relaxed baby! When I say he literally never cried, it's the truth! Kailey on the other hand, lets her needs be known! Colin had some troubles getting the hang of sucking on the nipple and we had to try lots of different nipples and techniques. Although Kailey struggled the first day, she got the hang of it really quick and we haven't had any problems since. When she is hungry, you know. She even makes the mouth movements where she is trying to get something in her mouth, which Colin never did. Until recently, he has never been motivated by food. I can tell that she is going to be a bit different...

Heading home:

Colin had to stay an extra night to get his temperature and feeding issues under control while Kailey was cleared very quickly. She fit very nicely into her going home outfit while Colin was swimming in his. He looked so tiny in the car seat while she didn't even need one of the inserts because it didn't fit with her in it.

First weigh in at the pediatrician (2 days after going home):

Colin was over a pound less than Kailey and had a slow weight gain even another few days later (I think it took over a week (from 6lbs. 7 ounces) to get into the 7 pound range while Kailey gained 11 ounces in a week (they want them gaining an ounce a day). They even look different on the scale!

Posing:

Need I say any more? I used these pictures for their birth announcements and thought it was funny that we were able to capture the same poses!

I would never change anything about either of their births, including Colin's. I think that everything happens for a reason and they are experiences that are a part of life. I think I could appreciate Kailey's to the extent that I did because of my experiences with Colin's birth. I think that witnessing Kailey's development is going to be unique and different and interesting and although I was always on a time frame with Colin in the beginning, I appreciate our patience now. It makes the rewards at the end that much better...

I love my little boy and girl and look forward to the journey that lies ahead with both of them. I appreciate their differences and uniqueness and I enjoy what they are both going to make our family...

Great-Grandparents

Colin and Kailey had a special week...they had visits from all 3 of their great-grandparents!! My dad brought his Mom, great-grammy down on Friday to meet Kailey and spend some time with Colin. Colin enjoyed reading the new books that Great-Grammy brought for him. While Colin napped, Great-Grammy enjoyed her snuggles with this little girl who slept all afternoon...

Thursday, my mom brought her parents down, Colin's Great-Poppy and Great-Grandma. Colin was napping when they got there, but he was very happy to spend time with his great-grandparents once he woke up.

I think it's so neat that my kids have great-grandparents and I'm so lucky to have 3 of my 4 grandparents in my life. It makes me so happy to see my grandparents meet and spend time with kids because it makes me realize how far I have come. I love days like these!

Thanks for Making Me Special!

Colin and I were reading books before bed tonight and I happened to grab a book that Colin's Great-Grammy gave him at Christmas called "My Little Book of Dear God Letters". I was skimming through the pages and one of the letters is called "Thanks for Making me Special". It made me smile because it is just really fitting to Colin...

Dear God, Thanks for Making Me Special!

Everybody has things they can't do well, maybe climbing a rope at the playground, doing tricks with a yo-yo, or drawing. It's a lot easier to be mad about the things that you can't do than to thank God for the things you can. Think about it for a moment...if everyone were the same with the same abilities, the world would be boring! But with a little work, you can get better at stuff. And, with a thankful heart, you can be your best at everything.

I have learned to be content whatever the circumstances. -- Phillipians 4:11

There have been so many times that I have teared up rocking Colin to sleep because I am just so proud of him for all of the things that he is doing on a daily basis now. I can't get over how much I love him at times, even on those days where it's incredibly frustrating because of the struggles that we face (like these new feeding issues). Colin does work really hard, and he certainly gets better at stuff on a daily basis.

Here are a few videos that show how Colin is getting better at stuff! The first video is of Colin in the "bear" position which is a new skill he has recently been showing off...

...and this second video is of Colin "step, step, stepping!" as he cruises along the couch and loveseat. What you can't see in this video because of my angle is that there is a big gap between the couch and loveseat and Colin bravely takes a bigger step to continue along the furniture.

Finally, this is a video for fun of Colin and Daddy "rough housing" which they do every day.

Oh and P.S....Colin "ate" a few spoonfuls at the end of dinner of pureed chicken nugget with a tiny bit of ketchup in it. He still blew raspberries, but tolerated more of it than I expected...overall, today was a tiny bit better so that was good for us...

And to add for fun, here is a picture of our little girl kailey resting peacefully (with her feet crossed) on the couch BEFORE she projectile spit up to the point of it coming out of her nose. Needless to say, we needed to give her a bath, and Colin being the great big brother that he is, wanted to help...

Stay Pooooossitive!

The title of this post needs to be sung in a sing-song type of voice while fighting the tears and frustrations. That was Chris' song at dinner tonight when we were dealing with a mess in so many ways as we try the first step of this feeding intervention.

As I mentioned yesterday, all of Colin's foods need to be pureed as we reteach the correct motor pattern of his tongue movement (the front and back movement) which I spent a LOT of time this evening doing. They also want us to introduce the foods separately again so he learns the taste of foods as they are alone and not mixed together as we have been doing so that he gets the nutrients. Colin has learned that he does NOT like us applying upward pressure on his chin after EVERY single bite and is now turning his head when he sees me coming with the spoon. I tried doing a singing count type thing which lasted all of 3 spoonfuls and then he was back to ignoring me again. On top of that, introducing new tastes? We need to be wearing a shield to protect us from the forceful spitting that is coming out of Colin's mouth. Pureed carrots? Nope. Pureed chicken? Noooooo. Pureed pastina? Only tolerable thing we offered tonight and he only ate half because he was sick. and. tired. of me directing his chin after every bite.

I know this is just day #1, but words can not describe how overwhelming this is. On one hand, we worry about the weight issues that some of the doctors have been addressing lately. On the other hand, we can't forgo the new technique because then we will set ourselves back even further. Just as we are learning this new life with two kids, we are learning this new life with new feeding techniques. I realized tonight that the pureeing part is easy, but getting your child to EAT the pureed foods is another story!

[sigh]

One foot. in front of. the other. We need to get back to THIS happy little boy at mealtimes...

Feeding Assessment

As you have all known for a long time now, Colin has had many issues with feeding. A month or so ago, maybe a little bit more now, it felt like we had come to a halt when it came to any progress that we were making. We attributed a lot of it to the molars that were coming in as well as him generally not feeling well. Although we had reasons, we have still been really frustrated because at times, it just has felt like we don't know what we should be doing to move forward and fix some of the issues.

Our biggest concern since starting Stage 3 foods is that Colin has never really chewed his foods. He takes the food into his mouth, mushes it around and then swallows. We have never really seen any progress whatsoever in this department. Our other concern is that Colin still has not been comfortable with foods that are solid including crackers, puffs, yogurt melts, cookies, bread, etc. We know textures are a large issue but don't know how to move in the right direction.

So, during one of my melting points, I finally reached out to Colin's speech therapist who had been suggesting St. Joseph's hospital in Patterson, NJ for the speech and feeding therapy/assessment program. She has always spoken very highly of it and at this point, we were willing to try anything. Going into this assessment today, we thought that even if we weren't really given any thoughts other than to "continue what we were doing", at least we tried and made an effort.

However, that was not what was said to us today and we have a plan that we are going to be following.

Colin's appointment was scheduled for 1:30pm and we needed to bring foods with us that Colin is comfortable eating and eats well. We got there early and spent time in the waiting room keeping Colin occupied. We needed to fill out a 7-day meal sheet as well as a stool survey and bring it with us for the evaluation.

A decal on the wall...

The evaluation is a team approach. We talked with the speech pathologist first who took a very thorough history on Colin's feeding troubles going back to birth. She watched us feed him his lunch and addressed these major issues: First, Colin does not lateralize his tongue when eating. He simply takes the food in, mushes it and swallows with no attempts to move from side to side. Second, he does too much "sucking" when eating any type of food including pureed food. What he should be doing is letting the food slide down his throat instead of putting so much work into it. Third, when eating food like his pancake pieces, his lack of chewing does not help him at all, so he uses that sucking/mushing skill to swallow the food. Apparently, NOT good.

We saw an occupational therapist next who assessed Colin's core strength (she was very happy with this considering his low tone) as well as arm and leg strength. She noticed that when we were feeding him in the high chair, we did not put the upper body straps on him. She said that if we do this, then we will be giving his upper body the support that his mouth needs (kind of like a strong base for his mouth). She basically said that we were doing a great job with his body strength, just need to continue to work on the exercises we have been. She was happy we just got Colin fit for the orthotics this week.

Finally, we saw the nurse practitioner who addressed "internal" issues. She asked thorough questions about his poop production and basically said that because he regularly poops rabbit pellets, he is not able to fully empty his intestines which causes a lot of pressure, and prevents his stomach from emptying the way it's supposed to. This can affect a child's eating because it keeps them from wanting more food and a variety of foods. We need to give him some Maalox every day to help "regulate" this. She also discussed the reflux which Colin just started medication for very recently.

So, this is where we are headed. First, we need to take a step back and puree all of his foods. We can keep foods like his pastina (pictured below) in their original form, but we need to puree the veggies and meat we put in it and start separating them back out of his meals so he learns separate tastes.

We need to remember to stay positive (this was our own suggestion) and try to keep the stress out as much as possible (kelly's suggestion from Landon's blog :)...

...and we need to do a lot of the feeding ourselves right now. We need to place the spoon with firm pressure on his tongue, pull it out, and then apply pressure to the bottom of his chin so that he takes the food onto his tongue and pulls it to the back of his mouth so that he swallows. This is why we need to stick to pureed foods right now.

They weren't completely happy with the fact that he solely uses straws and is not drinking from an open cup (although i don't know many kids at this age that ARE drinking from an open cup) because it is promoting that sucking pattern with food (even though we were always told a straw is the best for improving mouth strength!)...

We know this is going to take a LOT of practice and we will probably have a lot of set backs and challenges, but at least we have somewhere to start.
I had to go out and buy a food processor to puree his foods, and even though this is going to be a lot of work, I'm glad to have a plan. We need to follow up in 3 weeks to see how this first step is going. Hopefully with all of these methods, we will make some progress in the right direction...

...at least we can only hope!