Johns Hopkins Caring for Kids Campaign 2011

It's that time of year again - the Johns Hopkins Caring for Kids Campaign.  Please support this wonderful hospital!!

Here's the link to our donation page.

3 Year surgical checkup

We went to Johns Hopkins for Jack’s 3 yr surgical follow up visit. Everything looks great and we don’t have to return until next September. Jack had fun with the clowns (we run into them on EVERY visit). He saw Fizan (AKA: Dr. Abdullah) and they were like old buddies. At the end of the appt Jack got a lollipop and shook him down for more stickers. When we left he was on a sugar high and had 6 stickers on his T-shirt. LOL.

To celebrate the excellent news, I took Jack to the National Aquarium in the Inner Harbor. I wound up getting a 1 yr family pass. Jack absolutely loved it! He was so good too. He loved the jellyfish exhibit and the dolphin show was a huge hit. He actually enjoyed when people were yelling and clapping. He used to totally freak out over stuff like that.

Happy Summer!

I was just busy checking in on some of our CDH friends when I realized that Jack's blog is HORRIBLY out of date. I spruced it up a bit and updated some pictures.

This summer is going by so fast, but we're enjoying every moment. Jack will be 3 next month (his sister, Anika, will be 1 this week). Both kids are doing great. Jack has had a healthy summer and as a result he is pushing ahead with his learning, physical abilities and enjoying life as an 'almost' 3 year old. I feel like summer is the time we try to beef him up because he usually gets sick around November and it persists til spring. I'm afraid to weigh him since he seems to have gotten stuck at 28 pounds for the last year, but he looks good so I guess that's what matters. It is funny though that Jack and Anika are both in size 4 diapers! I hope he potty trains before she goes into size 5's!

It's funny how CDH seems to be something I can sometimes put in the back of my brain, but for whatever reasons likes to resurface from time to time. In the past 2 weeks I was contacted by 2 different docs that we formed close relationships with. They each had a new patient with a CDH diagnosis and wanted to know if they could pass along my contact info. I haven't heard from either of them yet - perhaps they're in that stage where you are sort of in denial and unsure of how you will proceed, if you will proceed. I wanted to say that if they find themselves reading this, please know that there are many other families out there who stood where you are now. Every CDH baby and pregnancy is different, but they are all hard. If there's anything good from this, know that there is an open and compassionate community of people out here who have tremendous knowledge and will hold your hand (so to speak) as you navigate through this. At the very least, you are in our thoughts and prayers.

Pneumonia (again!!)

Someone needs to tell Jack that 1) spring is here so NO MORE COLDS 2) mommy already has enough gray hairs - no need to add more 3) NO MORE COLDS (did I say that already?). 1 day after we all got back from NY Anika got all snotty. We chalked it up to teething and allergies. Then I started to feel 'off' but nothing bad. By Wed our sentinel chicken (AKA, Jack) was snotty. OK, definitely something infectious going on. We figured no big deal since the girls in the house were managing OK. By Thursday Jack was coughing but was still up for an afternoon walk to the park. By Friday morning he wouldn't get out of bed. He had a rough night of coughing so I thought he was just tired. Our nanny told us he slept til 10am then had a little bit to eat and drink but asked to go back to bed. I came home at 1pm and he was still in bed and getting worse. I thought, "It's Friday, they'll probably want a chest xray - let's get in to the pediatrician before it gets too late and they send us to the hospital just for an xray." I got him an appt for 2:40. In the time between, he really started going downhill: rapid breathing, retracting and completely lethargic. By the time I got to the pediatrician he was in respiratory distress. They wanted to transfer him to the hospital by ambulance but after a breathing treatment they agreed that I could take him if we went straight there. By the time I got to the ER (15 min ride), he spiked a 102F fever and was in bad shape. The xray showed a double (viral) pneumonia with a secondary bacterial infection. They gave him intravenous antibiotics, breathing treatments and Tylenol to get the fever down. When the fever broke his breathing really improved and he was able to sit up and talk. They were going to admit him overnight but he was doing much better after several hours so they let us take him home with the promise to return the next morning to the doc's office for a check.

Today the docs said he's still wheezing a lot and they gave us more meds for him to try and open up his airways. He won't slow down. I hear him running laps downstairs. Seriously, if I had double pneumonia I'd be in bed moaning! Kids are so resilient! In a matter of 24 he went from respiratory distress to playing (albeit, with a cough).

Looking back on yesterday I wonder if it's screwed up that I wasn't in tears or anything. When I called the nanny to see if she could keep Anika, she told me she was crying when she hung up with me. Friends sent texts to me asking if I wanted them to come to the ER. Don't get me wrong, I was upset to see him so sick but it's like you just go into auto pilot and ask tons of questions and try to get the best care and stay focused. I know it's probably a good thing but, really, not so normal. I'm sure other CDH parents know what I mean.

On a final and humorous note, I knew we spent WAY TOO MUCH time in the ER this winter because the nurses recognized us!! They even remembered that Jack liked Graham crackers. Geez!!

Johns Hopkins Radiothon

It's that time of year again...the Hopkins Radiothon!! Jack is going to Hopkins tomorrow for an interview with ABC2 news. Here's a LINK to the article about it.

There is also a LINK to the radio interview I did with Mix 106.5 and a write up on Jack's Journey.

Remember to call in or go online and make your donations!!

Let it snow

Just some photos taken today after the snow FINALLY stopped...

A new chapter...

Today marks 1031 days since Jack was diagnosed with CDH and it's taken me this long to finally feel like we can move beyond his CDH. It will always be in the back of my mind and every time I look at him I am so grateful for the miracle we were given. That said, now we have a second baby that deserves equal attention and I feel like Jack shouldn't be defined by his CDH, even if it will always be some part of him. I started a private family blog for close family and friends but I want to keep this blog active because I know Jack's story gives hope to newly diagnosed families. I'll try to post new photos from time to time but I won't blog about our day to day activities. I know that there are some folks that might want to follow Jack so please shoot me an email. I didn't have email addresses for everyone. My email is: victoriajensen@yahoo.com

Thanks to everyone that has kept up with Jack, prayed for his recovery and continued health and offered us so much support.

With love,
Vicki, James, Jack & Anika