Update on Dylan

Dylan had his repeat swallow study today. He did much better, enough that we were able to remove the NG tube, but he did not pass with a 100%. Dylan still has problems with thin liquids so all of his bottles will have to be thickened for a while. He will also be starting some outpatient therapy to help strengthen his throat muscles, 3 days/week. The thought is that the reflux meds are working to heal his throat but muscles are still weak from damage. While the medicines continue to work the therapy will hopefully speed healing process along. He will have a 3rd swallow study approximately 3 months from now for follow up.

The most important thing is that the tube is gone and he did better!

Thank you all for your thoughts and prayers.

Thoughts

Normally we use this blog for updates on the kids but not tonight. I (Madelyn) am really missing my father tonight. Some days it is as if he has been gone for quite a while and some days like today it feels as if he just died. Now when I say just died I mean died while he was still able to talk to me and be my daddy, not the way he was the week before he died, in the coma. I want to call him so badly my heart feels as if a piece of it is literally missing. Luckily, I can still somewhat imagine his voice which is good but that also makes it worse. I want to call him, hear him call me Madeloonie and be annoyed that I am bothering him and that I have not made enough lemon meringue pies for him. I also would love to get a hug from him and as much as I hated getting gizmos from him I would even love one of those right now. Let me explain since he was a police officer he knew about pressure points and a gizmo was him getting the pressure point in my neck/shoulder area. It has been almost 2 years since we found out he was sick and very quickly after that I became the parent and him the child. It has been a little over a year since he passed away. I don’t dream about him as often as I used to but I still do sometimes. In my dreams it usually starts off with him being very healthy and wondering why I haven’t seen him for so long and then it quickly changes to him being sick and I finally remember in the dream that he is no longer miserable and he is with God but until then I feel so guilty and then so sad that he is still hurting.

Going to the cemetery on the 1 year anniversary was overall good for me. As crazy as it sounds the one thing I was not looking forward to was actually seeing his name on the grave marker. I knew in my heart that he was gone but somehow in my mind if I saw his name it would be even more real and very final, is that crazy or what?

November 2005

Hospital Pictures

Here are some pictures from the hospital.

Madelyn torturing Dylan with the nurses help

Dylan after the torture, he is able to forget so quickly. Wish we could!

Kiera had to come and play to help Dylan forget what we did to him.

Dylan's hospital visit

As some of you know Dylan is in Medical City hospital. He is doing very well and we are expecting to take him home tonight. So now I will explain what happened. Two months ago Dylan, who LOVED to eat, stopped eating baby food. We and the pediatrician first thought it was just a phase and he would grow out of it, then we noticed that when he did eat it he would gag on the baby food no matter what the consistency. He would cough/gag sometimes while nursing or drinking from a bottle but rarely. Our pediatrician recommended Dylan have a swallow study to see if he had swallowed anything or if there was something wrong. On this past Friday morning Dylan had the study and he DID NOT do well. He aspirated, meaning fluid went down his windpipe rather than his esophagus, on every consistency of liquid. The only one he didn't have problems with, was baby food consistency which is the whole reason I took him in! Because it is not safe to feed him, he was admitted to the hospital so that a nasal/gastric (NG) tube could be inserted and so that Todd and I could learn how to put one in if it were to come out. Let me tell you, inserting a tube into an 8 month's old nose is rather horrific, for baby and parents.

Later Friday afternoon an ENT doctor put a scope down Dylan's other nostril, poor baby, and discovered that Dylan has SEVERE reflux. His esophagus is so swollen he is unable to swallow normally. He will be on NG or G tube feedings for 2 to 12 weeks and increased reflux medicine. He is only allowed to have 1-1 1/2 ounces of formula at each feeding orally the rest is through the feeding tube. He is allowed to eat baby food if he wants to. After 2 weeks Dylan will have another swallow study and a visit with the ENT. Hopefully at that time, he will pass his swallow study and we will be able to discuss removing the NG tube and returning to liquids. Everyone is optimistic that this will be resolved quickly.

Please pray for quick and full healing of Dylan's esophagus and that he or Kiera do not pull out the tube during the next 2 weeks.

Here are some of the studio pictures we had taken. As we have mentioned before we are rather biased but these babies are absolutely adorable!

this is the only picture that her tongue is NOT sticking out

had to add this one, look at all that drool, UGH!

Our First Swimming Pool Adventure

We took Dylan and Kiera swimming for the first time and were really amazed how well they did. A few days before, we went and bought a pair of cute swimsuits for them. Then we went to our neighborhood pool to try our first adventure in a pool. We thought they’d throw a fit, but they did surprisingly well.

We brought along Nana (Maddy’s mom) to help and take pictures of this milestone so all the pictures of the four of us are thanks to her. After a while, Maddy got out and took pictures while Todd, Dylan and Kiera kept swimming. This is probably too many pictures to include in a blog post, but we loved them so much we couldn’t eliminate them. How could you eliminate any pictures of the cutest babies ever?!?!? Unfortunately, Dylan was moving too much and we don't have as many clear pictures of him.

The four of us

Dad and the babies out for a swim

How cute am I?

Daddy and Daughter

Its been a big day & Kiera needed comfort that only her thumb can provide

Swimming and Nana - Its been a great day!

Assorted Pictures from Sick Days in Early May

The kids picked up Pink Eye in day care (they go to day care once or twice a week), then were really congested and Kiera got an ear infection. The two of us got sick, too with Maddy eventually losing her voice. We always seem to get cute pictures when they're sick, so we wanted to post a few from this bout of illness.

Maddy and Dylan sick and sleeping on the couch

Kiera stealing Dylan's bottle even though her bottle is right next to her

Obviously Dylan's sick if he'd let anyone take his bottle and he's not crying!

DFW Ski Resort

According to this Web site, we'll have a ski resort in the DFW Metroplex in a year and a half!

http://www.bearfireresort.com/

We've considered that this could be a hoax, and its funny and bold if it is fake. It takes some courage to create a Web site about a fake ski resort in our heat!

Kiva

Kiva has opened up more opportunities.

If you're unfamiliar with Kiva, its a novel concept that allows us to loan money (as small as $25) directly to desperately poor individuals in third world countries who are trying to start a business. Many of these people just need a few hundred dollars to start a sewing, cleaning or cooking business that would make them "rich" in their country. You get to read about the people who want loans and you can decide who you want to loan money to and how much money you loan. The recipients ("entrepreneurs") are screened by real financial institutions and repay the loans within about a year. Once its repayed, you can find someone else who needs a loan.

If you're wondering if you'll make money off the interest, don't even click the link. This is to help others. But instead of just donating money to something and never seeing it again, you can actually see the money helping someone, then with that same money, you can help someone else. Its a very cheap and selfish way to help others! :) You get to see the good things happening and feel good about yourself. And what other organization lets you use your same donation over and over? With everyone else, once you give it, its gone and you can't claim to donate it again. Not with Kiva. You can resuse the same money.

If you come back later and can't find this post, Kiva is in our Links section.