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.
Thursday, September 24, 2009
Monday, August 31, 2009
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.
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.
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.
Sunday, August 16, 2009
HAPPY HOMECOMING
One year ago today we brought Kinley home for the very first time! Kevin and I were so excited to show her off to family and friends since we were finally able to be with Kinley and have more than 1 person in the room at the same time. (You are only allowed 1 visitor at a time in the NICU.) We planned a small homecoming party for Kinley at our house on the day she came home. What Kevin and I did not plan on was that we stayed up pretty much all night, the night before, in our PCU room at Children's Mercy with Kinley. Then it took longer than we planned to be discharged. By the time we actually got home and settled in Kevin and I were pretty worn out, not to mention that just after we left the hospital Kinley started throwing up after feedings. I guess you could say we were worn out and stressed. Not the best combination, especially for me. Needless to say, we were not very good hosts that night. All the excitement of bringing Kinley home, coupled with all the responsibility that came with it got the best of us.
Tonight, to celebrate the 1 year anniversary of Kinley's homecoming we had the same group over for dinner and it went much better. For starters, Kevin and I stayed awake. Kinley played and ate dinner with everyone and there was no throw-up to clean up afterwards. Yeah! It was awesome to see Kinley having fun and doing so well now. It was also really special to celebrate this milestone with the people who were there 1 year ago.
Now for the pics...
She loves playing in her rocking chair and watching a little Phineas and Ferb.
Somebody stole Daddy's straw right out of his drink.
So close to walking, I really think it will come any day now.
Friday, August 14, 2009
Shawnee County Courthouse
We took Kinley to the Shawnee County Courthouse on Thursday since she was subpoenaed. Not really, but Grandma Seep works at the courthouse and she did ask us to come visit. It was really nice to bring Kinley to the courthouse (finally) because Grandma Seep and her co-workers have done so much for us and for CDH. Kinley did great at the courthouse meeting everyone and the trip to Topeka and back went pretty well also.
Here is Kinley with Grandma outside the courthouse.
Special Care Clinic...Again
I know I said last time that it would be our last visit to the Special Care Clinic, but we ended up going one more time. This time was a little better than the last time we went, but it still takes up most of the day and Kinley screamed the whole time we were there.
Basically we learned that Kinley now weighs 21 lbs (yay!), is still sating 100% (yay!), and we got the go ahead to stop Kinley's thickener (yay!). Before the appointment we had been giving Kinley unthickened whole milk in her sippy cups with meals, but she still got 1 bottle of Pediasure at bedtime that we thickened with half a packet of nectar thickener to 8 oz of the Pediasure, so she was not really on much thickener, but it will be nice to get her totally off thickener now. Other than that, it was a pretty uneventful appointment. I just felt bad that Kinley was so stressed out and screamed the whole time. Poor Kinley. She slept pretty well on the way home though.
I guess it is time to start thinking about a front facing car seat for Kinley. We still have her in her rear facing infant car seat because it goes up to 22 lbs., so there wasn't really a reason to switch to a front facing car seat before now. I am sure Kinley would like to finally be able to see where we are going rather than where we have been. She is growing up so fast.
Basically we learned that Kinley now weighs 21 lbs (yay!), is still sating 100% (yay!), and we got the go ahead to stop Kinley's thickener (yay!). Before the appointment we had been giving Kinley unthickened whole milk in her sippy cups with meals, but she still got 1 bottle of Pediasure at bedtime that we thickened with half a packet of nectar thickener to 8 oz of the Pediasure, so she was not really on much thickener, but it will be nice to get her totally off thickener now. Other than that, it was a pretty uneventful appointment. I just felt bad that Kinley was so stressed out and screamed the whole time. Poor Kinley. She slept pretty well on the way home though.
I guess it is time to start thinking about a front facing car seat for Kinley. We still have her in her rear facing infant car seat because it goes up to 22 lbs., so there wasn't really a reason to switch to a front facing car seat before now. I am sure Kinley would like to finally be able to see where we are going rather than where we have been. She is growing up so fast.
A Big Switch
This past Monday was Kinley's last scheduled OT visit with Infants and Toddlers of Johnson County. Kinley has improved so much with her eating and motor skills that she does not qualify for their OT services anymore. While we are extremely happy with Kinley's progress we will definitely miss Jami. Thanks for all your help with Kinley and her eating!
Next Wednesday Kinley will start her visits with the Early Childhood Development/Speech Therapist from Infants and Toddlers. We will be focusing on Kinley's language skills since she is still not saying any words. We are hopeful that with a little focus and hard work Kinley will start to pick up her language skills just like she did with her eating and motor skills.
We are so thankful for the great staff at Infants and Toddlers of Johnson County. They have been great with Kinley!
Next Wednesday Kinley will start her visits with the Early Childhood Development/Speech Therapist from Infants and Toddlers. We will be focusing on Kinley's language skills since she is still not saying any words. We are hopeful that with a little focus and hard work Kinley will start to pick up her language skills just like she did with her eating and motor skills.
We are so thankful for the great staff at Infants and Toddlers of Johnson County. They have been great with Kinley!
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