The good with the bad

Hello All,

I'm sorry this update took so long. I've had a hard time coming to terms with the fact that Kennedy will indeed need surgery again. The thought just hurts. Let me explain.

October 6th Art and I brought Kennedy back to CHOP for her triple bronc. A triple bronc is a broncoscopy done by 3 sets of doctors: ENT, GI and the Pulmonary doctor. The pulmonologist needed to check her lungs, ENT needed to check her airways and GI needed to check her GI track, esophagus and her reflux. To test her reflux she needed to have a probe in for 24 hours so we had to stay overnight. She was scheduled for 10 am but that didn't happen.  It was not a smooth day, a disaster even, but Kennedy was eventually taken into the OR around 2. Everything went smoothly and the doctors came to meet with us. They said that her swelling has gone down significantly, about 90% was gone! There are still two areas that are swollen right under the vocal cords so they want to give them a few months to heal. We'll have another bronc done in January to check the progress.  Lungs looked great as well!

The bad news is with her upper airway. They said her airway is so narrow she'd never be able to breathe through it on her own and that he wouldn't try any of the caps (the ones that would allow her to speak). He said she wouldn't last with breathing just through her nose and the airway is basically the size of a newborn babies. So our option is airway reconstruction surgery. In the weeks leading up to the bronc I hoped and prayed that she wouldn't need this surgery. it's a very serious, very scary surgery. the doctors will have to take a piece of her rib, cut open her airway and insert the rib piece to widen the airway. Recovery is hard and she'll be in the hospital for about a week. I can't imagine her being in the hospital that long. I know that sounds crazy since she spent 7 months there but she was an infant. she didn't know any different at that time and she didn't know what was going on. When I look at her now, running around and smiling and laughing, the thought of her being there and being in pain just breaks my heart. She's so vibrant and full of life. She doesn't slow down. It's almost like she's making up for lost time. It's so different from when she had her trach surgery, she's so different, and I wish to God she didn't have to go through this.

But with every situation, you have to look at the good and the bad. That's the bad, the ugly. The good is that after a few months of healing they'll be able to take her trach out! This is not the road that Arthur and I were expecting. Then again, nothing during this journey turned out to be what we were expecting.  But it's what has to be done to get our girl healthy!!

Right now we're looking at late March, early April for the surgery. It's good because it's still a few months away, bad because all I do is think. In the meantime we will do what we always do, enjoy every minute of every day and continue to make amazing memories together as a family like we did this summer!

I remember this time last year, Kennedy had just come home from the hospital and we weren't able to take her pumpkin picking or trick or treating. I remember thinking "it'll be different next year" and it certainly was!  Just imagine what she'll overcome in another year. The skies the limit with Kennedy!

Love to all,

The Crist Family

Some Updates

Hello all!

Let's start off with the most important stuff...KENNEDY PASSED HER SLEEP STUDY!!! She has officially been off the vent since May 21st and has been doing great without it! I can't tell you how happy and excited Arthur and I were to finally take her off. It just shows the great progress she continues to make. Our pulmonologist won't make any other changes until we see our ENT and they do a Bronchoscopy on her to see how her airways are. We need to see if they're healing and the condition of the scarring. Arthur and I have gone back and forth on what to do about the ENT and where to take her and we finally decided to take her back to Dr. Javia at CHOP. He's the best and since this is her main issue we want the best taking care of her. So we have an appointment with him on July 13th. We're thinking he's just going to schedule a bronc. So we'll see what happens and go from there.

Her oral feeding is the same, no worse no better. She is starting to take a little water from a cup and she's starting to eat VERY little by mouth (by little I mean about two spoonfuls a day) but I'll take any progress we can get. When she's ready, she'll let us know.

A few Kennedy milestones:

She's not officially walking unassisted but she's pretty close! She does her laps around the couch and makes her way out to the dining room. Once she figures out she can let go and walk we're in trouble!

She finally got her first two teeth! She looks so adorable when she smiles.

She said Dada!!! This is huge for her! As you all know Kennedy's trach prevents her from making any sound or talking. Since she breathes through her trach air never gets past the vocal cords. Well...the swelling in her airways must be getting better because she's starting to "talk" a bit! She's squeaking and starting to make out some sounds. One day we were in the living room and out came Dada! I thought I was hearing things until Makenzie popped her head up and said "Did she just say Dada?" It's the cutest thing because she gets such a kick out of hearing her own voice and tries to do it over and over again.

Kennedy went on her first overnight trip to LBI! And she did great!! She made herself right at home and it didn't seem to affect her at all. In fact, I think she loved being in a new place. Especially since it wasn't a hospital!

Makenzie still continues to be the light in Kennedy's life! I could watch those two interact for hours. Just so touching to see!

I think that's all the updates for now. I will write after we get back from CHOP.

 

Enjoy your Summer!! We certainly are so far =)

 

Love,

 

The Crist Family

It's been a while!

Sorry, we haven't updated in a while. Things have been quiet this winter. The doctors don't like to make many changes during "sick season." But now that we're in Spring Kennedy has a few busy and exciting weeks coming up!

First I will say that Kennedy is doing great! She's made some great progress hibernating over the winter. She has officially been off oxygen for about 3 weeks now!! We weened her and watched her vitals and she did great! So no more oxygen during the day, while we're out. Nothing!

She also has her sleep study scheduled for May 7th to see if she can go through the night without being on the vent. This is HUGE for Kennedy. I'll take her to the Children's Hospital at about 7:30 that night and stay overnight with her. They'll monitor her and watch her vitals. If they feel she needs a little bit of oxygen they'll give it to her but if she really struggles they'll put her back on the vent and we'll just have to try again. I'm really nervous! To not have her on the vent at night would be such a big accomplishment. I will post after the study with the results. Until then, fingers crossed!

Kennedy is now 18 1/2 pounds and 26 inches long. The GI doctor is very happy with not only her weight but her height as well. He said micro-preemies are usually on the shorter side so it's a struggle to get them to put on weight. You don't want them to be too short and too fat. But Kennedy has great height so we're just plugging away with her feedings. She still has some struggles with her feedings but obviously it's not affecting her at all!

Her biggest problem right now is eating orally. She doesn't eat anything by mouth. We're working with her and we go to speech therapy twice a month but there's just no progress. She literally locks her lips and turns her head when we go to give her the spoon. The therapist told us to let her explore the foods and learn to bring them to her mouth so we've been doing that but it's hit or miss. Some days she does it, most she doesn't. My nurse says one day it'll just click and she'll start eating more by mouth but I think her issue is she's never hungry. She gets so much formula during the day and overnight she doesn't really know what it means to be hungry. I'm taking her to a feeding clinic at the beginning of May with her GI doctor and her speech therapist so we can all talk about what the best course of action is for her. I'm hoping we can lower her daily intake and let her get hungry a little so she'll want more foods orally. We'll see! Kennedy has a very unique personality and I tell everyone she does things at her own pace. I'm sure this will be the same and when Kennedy is ready to eat, she'll eat.

As far as her ENT doctor goes there's no update. He didn't do the bronc in January. I'm not happy with him and if anyone has any recommendations for a pediatric ENT doctor please let me know. Otherwise I think we're headed back to CHOP.

As far as milestones go she's pretty much on target and has been doing really well with her physical therapy appointments. She sits up, stands and if you hold her hands she'll walk. She also loves "cruising" along the couch. She wants no part of being on the floor or crawling at all. I think that's because she sees Makenzie and she wants to run after her.

Makenzie has really settled into her role as big sister. Kennedy lights up every time she hears Makenzie's voice and she just loves her little sister. She loves her so much she decided to color her nose with green marker and put glitter all over her head. Do you know how hard it is to get glitter off an infants head? Let's just say she did that on Easter and Kennedy's head is still sparkling. But I just love seeing them interacting with each other. As a mother it is the most amazing thing to watch. I can't imagine how great it'll be as they get older. 

We celebrated Kennedy's first birthday on March 23rd. I look at pictures from last year and I look at her now and you wouldn't think they were the same baby. Nothing that she went through or is still going through has affected her in any way. She is the happiest little girl I've ever met. She smiles and laughs all day long! Mostly with her tongue sticking out of her mouth LOL! I always tell people her happiness now makes me forget the bad that she's been through and the more time that goes on the more of a distant memory it all becomes. She's truly amazing.

So that's it for now. I'm looking forward to the nice weather and taking the girls out more. My goal is to make this summer extra special for them. We all had such a hard summer last year, especially Makenzie. Arthur and I were traveling to Philly every weekend so she didn't get to do much. We've got a few things planned so we're going to make up for that this year! I think we all deserve it!

Love to all,

 

The Crist Family

Arthur, Katie, Makenzie & Kennedy