Swallow Study

Praise God!

Dylan did awesome on his swallow study today. As long as he drinks from a bottle with a slow flow nipple he does NOT have to have thickener. Unfortunately we have to go out and buy new bottles but we don't care! The only time he will have to have thickener in his bottle is if he drinks from the Avent bottles we already have but even then it is half the amount of thickener from before.

The speech therapist wants him to continue with therapy since he has made this much improvement. We are hoping to continue therapy here at our house rather than driving all the way to the hospital 3 days a week. We should find out later this week if insurance will allow a change in location.

Thank you everyone for your thoughts and prayers.

Tomorrow (Mon the 25th), the twins will be 11 months old. We can't believe how fast it has gone. We're already planning their first birthday party. It feels odd to be parents, especially of two kids that are almost a year old.

Tomorrow, Dylan goes in for his swallow study to see if there are any improvements since the beginning of therapy. This will be same test he failed which required the tube down his throat and all his food to be thickened. He shouldn't need a tube again, but we also don't expect him to pass it perfectly as he is still having difficulty with thin liquids (water) during therapy. Even if he doesn't pass on thin liquids, our main goal is that he does better than the last swallow study and hopefully decrease the amount of thickener we have to put in his bottle. One scenario that would be great is that he passes the test on formula consistency and then we wouldn't have to worry about him getting hold of Kiera's bottle or making sure that any caregivers give him ONLY his bottle. It is rather stressful leaving him in daycare, nursery or with anyone and praying that they don't forget and give him the wrong bottle. As an example, after he got tubes put in his ears last Friday, the nurses gave him a bottle and a half of pedialyte (a very thin liquid) without asking or telling us. To make matters worse, they had him lying on his back (he has to be at a 45 degree angle or higher to eat). So there's a great chance that he aspirated (the fluids went into his lungs) most of that feeding. We will try to update blog tomorrow with results.

On to happier and less stressful things. Dylan and Kiera are having a lot of fun playing together. Whether they're at the house, preschool or the church nursery, they stick together. They separate some of the time, but for the most part, they play follow the leader. If we're at the house, they'll make laps crawling from our living room through the kitchen, dining room, entry hallway and back in to the living room. They'll play some and then take another lap. Even with all the other kids around at preschool or church nursery, they would rather stick together. We want them to learn to play with others, but they have time for that later. Right now its too cute that they like each other that much.

Sorry, no pictures this blog. We will hopefully post pictures soon.

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Teething, Sitting and Walking

The babies had a big week! They're always making progress, but they worked overtime this week.

First, Kiera started teething. She has one bottom tooth coming up. It started in the middle of the week, and today it finally broke the skin.

Thursday, Dylan started sitting up on his own. He's never looked like he was trying before, so we weren't expecting it. And even when he does sit up, he doesn't look like he cares. He just sits up like its something he's always been able to do. The first time he sat up was right in front of his dad, but Todd was working with Kiera and didn't realize what was happening until it was too late. Dylan is apparently punishing his dad and won't sit up when Todd's in the room any more.

Saturday, Kiera took her first steps. She walked holding her dad's hands all day Saturday while mom was at work and then showed mom when she got home! She's also started pulling up now on the furniture and us.

Picture-Mania part 2

Here's part two of us trying to catch up on pictures.

Kiera fell asleep playing

Dylan is one mad baby!

Dylan enjoying his first day without the feeding tube. There's nothing he enjoys more than meal time.

Dylan's having a blast with three bottles at once!

...well, all was fine until his dad tried to pick up the empty bottles. Dylan got very protective and maintained the serious, suspicious attitude for a while. He's still hoarding bottles weeks later.

Kiera decided to pull of Dylan's diaper. He doesn't usually care what she does as long as she doesn't poke him in the eye, give him CPR chest compressions (she's tried) or of course, steal his bottle.

Dylan and Kiera enjoy swings even after a five hour car ride

Picture-Mania

We've been a little busy lately and haven't been able to post many of our pictures, so we're going to have a compilation post to get a sampling of these posted.


The only night we've ever spent away from the twins

Lyndsay and Alyssa (and Alexis - not pictured) are our regular babysitters. These are some of our favorite people in the world because they give us a chance to get out of the house without worrying if the babies are in good hands. Their sister Alexis also helps but was out of town this weekend.

Kiera likes dogs a lot

Dylan with drool on his chin and his gut hanging out - what a look!

Memorial Day Weekend

Kiera, Dylan and their friend Carson

Double Trouble High Chairs





Rolling around on the floor

Kiera often uses her feet to help hold her bottle

Dylan got caught stealing the edges of the puzzle mat again!

Random

We're not sure what this one's about.

Cuteness!

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.