Eight Months? That Can't Be Right.

It is hard to believe that Kinley is already over 8 months old. I really don't know where the time went. On the one hand it seems like just yesterday we were at Children's Mercy, but on the other hand it seems normal to have Kinley at home and making so much progress. Each day Kinley seems to be discovering new things and it is so much fun to watch.

Since the last time I updated the blog not much has happened. We have had a few appointments, but no big changes in Kinley's care.

The first appointment we had was with Kinley's friend from Parents as Teachers. Kinley always enjoys those visits because all she has to do is show off her old tricks and play with new toys. Kinley is still pretty much on track developmentally. She just recently started repeating consonant sounds, which is a good sign. She will say dadada and babababa along with other sounds. It is pretty cute to watch her "talk".

Kinley also saw her OT from Infant's and Toddlers of Johnson County. Once again, Kinley had a good progress report. Jami tried out some new foods on Kinley and it went pretty well. I don't really know how to explain what Jami fed Kinley because I was not able to be at the appointment, but Kevin described it as fried green beans. Basically it is a high nutrition, high calorie snack that Kinley can feed herself with her hand. It will dissolve in her mouth, but not quite as easily as the puffs that we are feeding her now. Kevin and I are supposed to keep offering Kinley baby food after most bottles, at least 2-3 times a day. Preferably we will offer Kinley baby food at the same time we eat so it is more of a social event for Kinley. Kinley remains NG free, so Kevin and I are very happy about that. Kinley is also getting better at eating baby food from a spoon. We have found that she likes it when we mix baby food with rice cereal and warm it up before feeding it to her. Kinley also really likes these sweet potato puffs that I bought for her.

The next appointment was at the pediatrician's office to get another round of the RSV shots. Kevin and I were not looking forward to making Kinley get more shots, but we were excited to see how much weight Kinley had gained since last month since she has been eating really well. We were disappointed to learn that even with all her oral intake, she did not gain any weight from the time of her December RSV shots to her January shots. She was 16 lbs 4 oz at both visits. Kevin and I decided that Kinley must have been on a growth spurt, because she has been eating really well and we were really surprised she had not gained any weight. Oh well, we figured that Kinley had an appointment at the Special Care Clinic later in the week, and we were sure we would hear if they were concerned about her weight.

The visit to the Special Care Clinic went better than I had expected. Kinley weighed 16 lbs and 9 oz on their scale, so as far as they were concerned that was good enough weight gain, especially since Kinley is eating exclusively orally now. Kinley did fall to just above the 25% for weight (she had been closer to the 50%), but she is still around the 50% for height and head circumference. We were told that we can continue to do what we have been doing with feedings and to schedule another visit in a month. We were supposed to see the occupational therapist at the appointment, but due to a scheduling glitch, she was not available. We will try to hook up with the occupational therapist at our next appointment.

Another bit of good news is that Kinley is finally starting to get into a routine. She will usually wake up around 8:00 am and eat her first bottle before 9:00 am. Then she will usually jump in her jumper and play for a while before taking a nap. When Kinley wakes up from her nap the cycle repeats itself again. Kinley has been eating four times a day about 4 to 5 hours between feedings. Kinley will usually take between 6 and 8 ounces at a bottle and gets spoon fed after at least 2 out of her 4 feedings. Bedtime has been around 10:00 pm. It has been so nice to have some resemblance of a routine. It has allowed Kevin and I to better plan our days and we have even been able to work in a few shopping trips with Kinley to get her out of the house for a little bit.

Just yesterday Kevin noticed a tooth trying to come in. It is barely visible, but you can feel it starting to come in on her lower gum line. It doesn't really seem to bother Kinley, she has been her normal, happy self for the most part. She is one tough little girl.

Kinley has not started crawling yet, but she is close. For now she is mobile by rolling on the floor everywhere. Watch out, if Kinley decides that there is something she wants, she will find a way to get it.

Long Overdue

It has been a while since I updated on Kinley's day to day progress, so here I go.

The good news is that Kinley is really doing well with her bottle feeds. She has not needed an NG feed for over a month now. At this point, the occupational therapist said that we are basically done with the NG!! We still have the NG supplies at home, but we won't use it unless Kinley goes several days without meeting her minimum volume. If she has one day where she is a little short on oral intake she usually makes up for it the next day. It is nice to be able to look at the big picture now and not focus on each bottle. Kinley will usually take between 4 and 7 ounces at each bottle and will eat anywhere from 4 to 6 bottles a day. Kevin, Kinley and I have all really enjoyed being NG free this year!

Kinley still needs more practice and encouragement when it comes to spoon feeding. She likes to put everything we feed her in her mouth, but then she just moves it around in her mouth, makes some funny faces and then spits most of the food out. I am sure it would be really funny if it was not so frustrating. So far we have found that Kinley likes sweet potatoes and bananas the best. This does not come as a huge surprise since I ate a lot of bananas while pregnant with Kinley. Kinley is still seen by the occupational therapist from Infant-Toddler twice a month to concentrate on her spoon feeding.

Since Kinley has not needed an NG feed overnight, she also does not need to sleep with her apnea monitor on. Kevin and I decided a while ago that once Kinley did not need those two things anymore she did not need to sleep in our bed overnight. We have been working on transitioning her to sleeping in her crib overnight and it has been a challenge for everyone. We moved her crib from her room into our room so it was not as big of a change all at once. We moved her Tucker Sling into her crib (that is what allows her to sleep at an incline to help with her reflux) so that she had some consistency between our bed and her crib. The transition has gone as expected. We used to be able to put Kinley to bed and she would just lay in bed silently until she fell asleep. Now she just cries until she falls asleep. There are some nights I put her to sleep in my arms and then transition her into her crib and that works pretty well. I guess we were pretty spoiled when Kinley would just go to bed without a fuss. We know in the long run that this will be better for her. It will just take her a while to get used to the change.

As far as Kinley's development goes, she is rolling all over the place! She can't quite crawl, but it looks like she is trying. Kinley can sit on her own and she loves playing with all her new toys from Christmas.

Last week we had a quick visit at the pediatrician's office for Kinley's flu shot booster, but other than that, no real appointments which has been nice.

Kinley continues to drool a lot, but still no teeth.

I think that pretty much covers it. All in all Kinley is doing really well and we are very happy with her progress!!

Kinley And Her Coffee?

Kevin and I don't really like the cold, and with Kinley neither one of us gets a whole lot of sleep, so we have been drinking more Starbucks than normal. (Thanks for all the gift certificates!) The last few times I have had Starbucks Kinley seemed really interested in my cup. The last time I asked for an empty kiddie cup and as you can tell, Kinley new what to do with it right away. I think she was a little disappointed that there was nothing to drink inside her cup, but maybe a sippy cup is on the horizon for her.

Finally, an Update

I can't believe I have gone so long without an update. Sorry about that, but no news is good news as far as Kinley is concerned.

Kinley had a pretty good first Christmas. I am not sure she knew what all the commotion was about, but she did really well with it all for the most part. She went out to dinner (a first for Kinley) with Kevin and his family the night before Christmas Eve. I had to work, but was off Christmas Eve, Christmas Day and the day after Christmas.

Christmas Eve we went over to Kevin's parent's house to celebrate with family from out of town. Kinley did exceptionally well that day with her bottles. She ate a total of 825mls!! That is including a few bottles at Kevin's parent's house. Normally she does not eat very well away from home, but she gave Kevin and I an early Christmas present by eating really well and allowing us to stay and visit with family longer. It was a really nice day spent with family and friends.

Christmas Day we got up and headed back to Kevin's parent's house. I was kind of expecting a repeat of the day before, but should have known better. 825mls was a record for Kinley, so she was not all that hungry on Christmas Day. We tried to feed her at Kevin's parent's house again, but she threw up a good bit and was just a little fussier than her normal self. Who can blame her really, the 2 days prior were full of excitement for her and she was out of her normal routine. We went home to try and feed Kinley again and then headed to Kevin's aunt's house for Christmas lunch. We ended up missing lunch, but made it in time for gifts. Kinley was still a little fussy and we had to leave when it was time to feed her again. Still, it was nice to get out of the house with Kinley and spent some time with family, even though it was not as much time as we would have liked.

The day after Christmas my parents came over to our house to celebrate. My sister was sick, so we missed Aunt Mary, but Kinley enjoyed getting to sleep in a little and hanging out at home. She finally got a chance to open her gift from Santa too, which was fun. We had been so busy the day before that Kinley didn't have a chance to open her gifts from us or Santa. She got a toy box from Santa which ended up being great since she got a lot of cool toys from everyone else. She also got several very cute outfits, and a University of Minnesota onesie from Great Aunt Jody in Minnesota. Kinley was not allowed to wear her new onesie on New Year's Eve since Minnesota played KU in the Insight Bowl, but we might let her wear it now that the game is over and KU won!

Overall I think Kinley was a little overwhelmed with Christmas and obviously didn't understand what it was all about, but she did pretty well.

Here are a few pics of Kinley opening some of her gifts. There were way too many pics to post them all.

Like I said earlier, Kinley got a lot of cool new toys, but I don't know if any of them compare to the boxes that the toys came it.

Another Shot

Today Kinley had to get her second round of RSV shots. I hated bringing her out in the cold just to go get a shot, but knew it had to be done. Once again Kinley was a trooper and just cried for a moment during her shots. I feel like Kinley has had so many shots lately with her 6 month shots, first round of the flu and now her first and second round of RSV shots. In just a couple of weeks we have to go back for her flu booster and then in another couple of weeks it will be time for her third RSV shot. Hopefully with all these precautionary measures Kinley will stay healthy. Oh well, tis the season I guess.

The good thing about getting out of the house and to the doctor's office was that Kinley was weighed again. Kinley now weighs 16lbs and 4oz. That means that she is continuing to gain weight pretty well! This is especially great since we have still not used the NG tube in 17 days!!! (Of course we are counting.) Kinley is now taking about 720mls to 750mls a day from bottles. Her goal is still 840mls, which is why Kevin and I were so excited that she is still gaining weight at her current intake. Right now she is taking enough by bottle to maintain her hydration and from the looks of it still gain weight at an acceptable rate. Nicely done Kinley!!

Other than a few shots here and there, it looks like the next few weeks should be pretty low key. That should give us plenty of time to spend with friends and family for Kinley's first Christmas. We are really looking forward to that. Looking back at this year I can't believe all we have been through and to be at this point now is just amazing. Kinley continues to inspire Kevin and I and we hope to do the same for her. Merry Christmas!

What a Grinch!

Have You Donated Lately?

We have. Kevin's work had a blood drive yesterday, so Kevin, Kinley and I thought it was important to give back. Obviously Kinely was not able to donate, but I gave her my sticker because I knew she would have donated if she could have. Neither Kevin nor I had donated blood before, but after Kinley's stay at Children's Mercy we know how important it is now. If you remember, the reason Kinley came off of ECMO was because she was bleeding too much after her repair surgery. I can't remember exactly how many transfusions Kinley had the day she came off of ECMO, and frankly I don't want to, but it was that blood, among other things that saved her life. It wasn't just that one day either, Kinley needed blood on several other occasions while at Children's Mercy.

Everyone at the blood drive was really nice and helpful. They all said how cute Kinley was and when they heard her story and why we were donating blood they asked if they could take our picture. There is a chance Kinley might end up in a calendar promoting blood donation.

Here are a couple of pics that I took once we got home. If you look closely you can see the sticker I gave Kinley saying "First Time Donor".