Kinley Is Walking!

Just before we left for Colorado Kinley started taking more than just a step here and there. Her primary means of transportation was still crawling though. I was hoping that Kinley would try to walk more in Colorado being around Jasmin, but Jasmin ended up crawling with Kinley more than Kinley ended up walking with her. Jasmin was such a good host and made her guests feel at home. Oh well, Kinley must have been taking notes on walking because she has really taken off since we got home. See for yourself in this little clip.

Kinley still crawls about 50% of the time, but as you can see she is getting pretty good at walking now.

Trip Home From Colorado

NO BOTTLES IN THE CAR was our motto for the trip home. So, about 3 hours into our drive home we stopped at a Wendy's and got out to eat a late dinner. I ate while Kevin fed Kinley her bottle of Pediasure and Kevin was able to get Kinley to take all 8 oz. Then it was my turn to watch Kinley as Kevin ate. Well, before Kevin was even able to order his dinner Kinley sent all 8 oz of Pediasure back up, right in the dining room of the Wendy's. Kevin and I felt bad for Kinley and also for the people around who had to witness the ordeal. The other guests were really nice and brought several napkins over to us to try and help, but there was a lot to clean up. I took Kinley to the bathroom and undressed her, washed her off as best I could, then changed her clothes while Kevin attended to the mess that Kinley left on the floor. We just tossed her outfit, bib and burp cloth and left Wendy's as soon as we could. We later went through the drive thru because in our hast to clean up and get out of there we forgot that Kevin still had not gotten a chance to eat. I decided to try and give Kinley a few Goldfish crackers in the car a little later since she basically missed dinner, but stayed away from any other bottles for the rest of the trip. I felt bad not giving her anything else to drink, but we had a long drive ahead of us still and we could not keep stopping to feed her just to have her throw it all up again. Luckily Kinley cooperated and slept for most of the drive that we had left. The rest of the drive was pretty uneventful.

When we did arrive home the next morning Kinley was starving. She ate better than we had seen her eat in a long time and drank more than 8 oz of milk from her sippy cup. (Kinley's sippy cups are 8 oz and we had to refill the cup during her feeding.) Anyway, from that point on Kinley has really taken off with her table foods and sippy cups. We haven't touched a bottle since we got home because Kinley is drinking so well out of her sippy cups during the day!! She has also been trying new foods or accepting old foods that we haven't been able to get her to eat in a while. Some of those old foods include applesauce, cheese, freeze dried fruit, french toast sticks and yogurt. Some of the new foods Kinley has tried include grilled cheese sandwich, sliced chicken deli meat sandwich, animal crackers, and a peanut butter and jelly sandwich. The trick to getting Kinley to eat any sandwich is to cut it up and feed it to her, one bite at a time, on a fork. She is also getting better at feeding herself with a spoon.

Kevin and I are thrilled with Kinley's progress. We are a lot happier now that she is eating better and she seems to be a lot happier also. We don't dread mealtimes anymore and that is really nice for a change.

Pics From Colorado

Kevin and I love visiting Arin. It is such a different atmosphere compared to where we live, so it is a nice change of pace. Arin and her husband live on a ranch in the northwest corner of Colorado along with their daughter, who happened to be celebrating her birthday while we were there.

View from Arin's house down the driveway.

This is the river that runs near the house.
Picture of their garden. We ate fresh sweet corn, zucchini, carrots and tomatoes while we were there. Delicious!
We were able to be there for Jasmin's birthday party. While Kevin and I were happy about that, Kinley was not too sure about all the extra guests. Kinley was fine when she was playing in the playroom, but as soon as Kevin or I took her out in the living room/kitchen area she freaked out and started screaming. We finally gave up on having her attend the party and dressed her up in her warm clothes so Kevin could take her for a walk. Funny thing is, when she was all bundled up and in her stroller she didn't mind being in the kitchen or living room with all the other guests. Kevin never ended up going for that walk with her, we just left her all bundled up, in her stroller inside and she was content.

Jasmin getting ready to blow out her candles.

Opening gifts.

Look who finally made it out of her stroller to get a better view of all Jasmin's gifts. Still bundled up, but making progress.
Even more progress as Kinley shed her hood and hat. She doesn't seem to sure about it though.

Kinley was able to see pigs up close and personal for the first time. She was fearless with that fence between her and the pigs.

Kinley's first time riding a real horse. Thanks for sharing Jasmin!

On the very last day of our vacation, as we were about to leave, Kinley finally let Arin hold her for the first time.

Thanks so much for a wonderful vacation. We had a great time!!

P.S. If you are wondering how Kinley ate on vacation I would have to say medium. We fed her at the table in her Bumbo with Phineas and Ferb on for most meals. She ate pretty much the same on vacation as she had been eating at home before we left. We tried a bottle a couple of times while there and she did OK. She would take most of the bottle, but then spit up just a little once in a while. Kinley did try a couple of new foods on vacation with her favorite being sausage from a breakfast burrito. Overall I would say she did pretty good for being away from home.

Trip To Colorado

Since Kinley did pretty well on the previous vacation to Tan-Tar-A, we decided it would be nice to take a trip to Colorado and visit my college roommate from TCU. (Before I went to KU for pharmacy school I went to Texas Christian University in Fort Worth, TX and got my undergrad degree in Nutrition.) Anyway, from our house to Arin's house should have been a 13 hour road trip.

Kevin and I decided the easiest way to make the trip with a 15 month old was to drive through the night. We ended up leaving our house at 10 am on a Tuesday a couple of weeks ago and drove to Topeka to visit my parents for the day before leaving there at 7 pm. From Topeka the trip should have taken only 12 hours, plus there was a time change so we expected to arrive at Arin's around 6 am on Wednesday.

The trip started off great. Kinley had gotten used to her new car seat and traveled pretty well in it. Around 8:30 pm I gave Kinley her night time bottle in her car seat as we were traveling so that we could stay on pace to arrive on time. I have given Kinley bottles in her car seat before and she does just fine. In fact, sometimes she eats better in the car. I was able to get Kinley to take her whole 8 oz bottle of Pediasure (woohoo). We kept traveling and just before we hit Hays, KS all 8 oz of Pediasure came back up. There was Pediasure on Kinley, in her car seat and on the seat of the car. It was everywhere, and so was the smell! I was ready to turn around, cancel the trip and head home. Lucky for me, Kevin is good at staying calm and rational in these situations. He used the GPS to find a hotel in Hays with laundry services and saved the day. (He is so smart!)

We ended up stopping at the Ramada in Hays and I was fully willing, and expecting to pay for a room for the night just to give Kinley a bath and do a load of laundry. I was shocked when Kevin came back from the front desk and said they were going to let us use a room for free! The laundry services were coin operated, so we paid for that, but that was pretty cheap. When Kevin explained to the gentleman at the desk what had happened he said they had a whole wing where the air was broke, so they could not rent out any of those rooms anyway. He said we could just use one of those rooms. Kevin and I didn't care about the air not working, we just needed to clean up, so it worked out great. They were really nice at the Ramada. Here are a couple of pics of Kinley (after her bath) crawling up and down the hall as we waited for the washer/dryer to end. Keep in mind it is around midnight and she is wide awake.

I was able to get Kinley to take another whole 8 oz bottle of Pediasure while we were at the hotel, and that one stayed down!

After our fun little stop in Hays we were back on the road again. We made it past Denver and just about an hour and a half shy of our destination without any problems. That is when Kinley woke up and I had the bright idea to give her another bottle for breakfast instead of stopping and letting her eat table food. We didn't plan on our stop in Hays though, so I thought a bottle would be better so that we could keep traveling. It was 8 am by this time and if we didn't have to stop earlier we would have arrived at our destination 2 hours ago. Just about 2 oz into the bottle Kinley sent it right back up. Again all over her and her car seat. At least this time in was only 2 oz and it didn't get on the seat of the car. We were in the middle of nowhere Colorado, so we didn't have much of a choice but to keep going. Needless to say, I didn't try feeding Kinley a bottle in the car again. I don't think the problem was car sickness, because she has eaten just fine in the car in the past. I think she was still getting over her cold and that made it hard for her to take a bottle.

We finally ended up arriving around 9:30 am and the first thing we did when we got there was to give Kinley a bath and do another load of laundry. Kevin is an expert at taking the new car seat out of the car and taking it apart to wash.

Aftermath From The Five Shots

We were told even before Kinley got the shots at her 15 month check up that she might run a little fever for a few days, be a little extra fussy, and not eat quite as well as normal, but we were not prepared for how much the shots really affected her.

I know having a child with CDH means ups and downs, and to be fair I should post on both the ups and downs, but after a long mealtime, or day, or week, or weeks of fighting with my daughter to eat or drink anything, the last thing I want to do is type it all out for a post. This is one of the reasons I haven't posted in quite a while.

Kinley did run a low grade fever for a few days after the shots. She was also pretty fussy. We struggled to get her to eat or drink anything. I am sure this would be frustrating for any parent, but for parents of a child with CDH it is heartbreaking. We struggle with eating on a daily basis anyway, so when there is a decrease in her intake it really gets to us. To make matters worse, Kinley started to get a little cold just after she should have been getting over the aftermath of the shots, so that just prolonged her decreased intake.

We tried all we could to help Kinley with her symptoms, Tylenol for fever, vaporizer and Vicks Babyrub for her congestion, but in the end she just needed time and rest to get back to normal.

Luckily Kinley started to get a little better just before our trip.

15 Month Check-up

August 28th Kinley had her 15 month check-up with her pediatrician. Kinley's appointment was at 10:00 AM to coordinate with nap time and feedings, which we like to do at home. Anyway, at 11:00 AM we were still sitting in the packed waiting room so I got up and politely said, "I realize you are busy, but if it is going to be much longer could we please just reschedule because it is getting dangerously close to nap time for Kinley and she is getting really fussy". (For those of you who know that I have a little temper and basically have no patience when it comes to waiting for appointments, after all, that is the reason you schedule appointments in the first place, I really did try to stay calm. Normally this doctor's office is pretty good, but they must have had a scheduling debacle this time or something.) I was told that if I wanted to reschedule the next appointment would not be until the end of September, but that Kinley could see the nurse practitioner instead of the doctor and then they could get her in quicker. While I was disappointed, I agreed to see the nurse practitioner so that we could move on with the rest of our day.

We were called back shortly after that and we didn't have to wait in our room long before the nurse practitioner came in to see Kinley. Kinley did concern the nurse practitioner right off the bat though. He must not have looked over her chart before coming into the room, which I get if he was trying to help out and speed things up for us, but he kept asking the regular questions for a 15 month check up and this was basically how the first few minutes of her exam went:

ARNP: Do you have any concerns today?

Kevin and I: No.

ARNP: So how many words does Kinley have now?

Kevin and I: None.

ARNP: None? What about mama or dada?

Kevin and I: No.

ARNP: And how long has this been going on?

Kevin and I: (Not really sure how to answer this question.) Well, since she has not started to say any words yet, I guess since birth.

ARNP: Can she point to different body parts, like her belly, if you ask her to?

Kevin and I: No.

ARNP: Is she walking?

Kevin and I: No.

Kevin and I finally decided to end this and explain everything that Kinely has been through and that she is being followed by an OT, Speech Pathologist, Early Childhood Development Specialist, and Audiologist just to name a few. This made the nurse practitioner feel better and we were able to move on with the exam.

Kinley passed the rest of her exam with flying colors and once again got a comment on how well her vocal cords work. (Kinley usually screams when she is in any doctor's office and the fact that we waited so long made her extra fussy.) Plus she ended up getting FIVE shots, so that was just the icing on the cake for her. Poor Kinley, she really had a rough appointment and I can't say that Kevin or I did much better. It still hurts every time we see her get shots. At least they were able to give her the flu shot so we have that out of the way. I am glad we don't have to came back in a few weeks just for that.

As far as Kinley's measurements go, she weighed 21.9oz (30%) and her length was 30 inches (50%).

With Kinley getting closer and closer to that 22lb mark Kevin and I decided it was time to bite the bullet and get her a new car seat. We went and got her a fancy new chair that we were all excited about. We finally got it installed and let Kinley try it out and she hated it. The one we got can be rear facing for kids up to 35lbs, so we decided to keep her rear facing. I didn't think it would be much of a change for her, but she definitely noticed and was not a fan of the new chair. I am sure as she gets more comfortable with it she will realize how much better it fits her and then start to love it.

Sorry, no pics of Kinley in her new carseat. Maybe next time.

ENT

If you remember, not the last time Kinley was at the Special Care Clinic, but the time before that it was recommended that Kinley see an ENT. The reason for that recommendation was 1) follow-up from being on the vent for the first month of her life and 2) because Kinley was making a noise that sounded kind of like she was gasping for air, but Kevin and I knew it was just a noise she made every once in a while because she was excited and having fun. We were not concerned about the noise at all but thought it might be nice to get a follow-up with an ENT to make sure the vent didn't cause any damage to Kinley's throat.

Well, last week Kinley finally got in to see the ENT. The visit went pretty much like I thought it would. The nurse came in and did her assessment of Kinley, Kinley screamed through the whole assessment, and then the ENT came in and said Kinley looks ( and sounds ) great. The ENT said if we wanted her to scope Kinley she could, but since Kinley is eating and drinking without too much trouble and her vocal cords seem to work well there was really no need to put her through the procedure. The procedure would involve the ENT putting a little camera up Kinley's nose and then down her throat. To Kinley it would feel a lot like getting an NG tube placed and Kevin and I didn't see any reason to put Kinley through that. Especially when the ENT said that even if she found anything they would not consider treatment unless it started affecting Kinley's speech, breathing or eating.

It was a quick and painless appointment although anyone who heard Kinley screaming on our way out might have thought otherwise.